Survey Results
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How old are you? (specific age or range)
What is your gender identity?
What is your racial background?
What types of conditions or disabilities do you have (cognitive, physical, chronic, etc.)?
Do you have any other identities, marginalized or privileged, that you'd like to share?
How do your disabilities or conditions affect your ability to participate in activism?What sorts of activism topics are you involved in?What kinds of barriers, if any, have you encountered in the accessibility of activism and activist activities? What things have organizers done that made them inaccessible to you? Have you received any pressure to do them or criticism for not participating?What kinds of activism have worked for you? What things have organizers done to make these activities or spaces safer or more accessible to you?Have your marginalized or privileged identities intersected with your disability identity/ies in ways that affect the accessibility of an activity or space?Is there anything you'd like to say to an organizer planning activities or creating spaces for activism?
If you shared a personal story here, may I share it with the audience?
May I quote you (while observing your wishes in the previous question)?
May I include your responses in a public document for others to view, as a supplement to my talk (with all privacy/credit requests honored and contact information removed)?
If you would like your name and/or any social media links associated with any quotes or in the public document, please enter that information here.
Any other thoughts, notes, or privacy requests? Do also let me know if you'd like me to run anything I use by you before the talk.
5/25/2018 15:51:4627nonbinarywhite
physical, psych, chronic
Jewish, queerI'm not able to be outside, standing for long periods of time.disability rights, JewishI've gotten harassment from disability activists with no illnesses for not doing in-person actions. Jewish activists have been far kinder.Usually I'm online educating people. Sometimes I share the work of people more qualified.Yes, so many groups expect you to meet and eat with then, but money and illness limit what I'm able to eat/how far I travel.Please do not judge people for not being able to take part. Trust them when they tell you they're not able.
Yes, with specifics removed
Yes, but without my name
(removed per request)
5/31/2018 13:55:55Early 30sWomanEast AsianPhysical, chronicQueer (bi), immigrantI cannot get into/participate in events held in inaccessible venues when my disability flares up and I cannot partake in most marches/walks/rallies, which literally don't have room for me and my mobility deviceDisability rights/advocacy/accessibility, mental health/depression, intersectional representation & diversity/inclusionI've attended supposedly accessible events only to find that the elevator was broken and thus I couldn't get to the room I was trying to get to, people were rude and either ignored me or tried to literally shove me out of their way, be stuck in a space as nobody made room for me to manuever, and so on. It's less pressure to do the activities and more terrible ableism for daring to enter and exist into that space which makes me not want to go out and interact with people ever.Online activism - discussion groups, twitter chats, hashtag campaigns, web petitions - are much easier to partake in. There are no physical barriers or emotional ones like unwelcoming audiences.It's hurtful to try and be part of safe spaces that only allow parts of your marginalized identity (queer or maybe POC), especially when everyone throws around intersectionality as a descriptor, as if they understand the theory and its history when in fact they're just coopting social justice terminologiesPost accessibility info (as detailed as possible) for the event and educate yourselves and your audiences on ableism. Work with disabled people to ensure that your event experience is decent. Know that to coming to your activity/event is putting trust in you and that trust should be honored and respected.Yes
Yes, but without my name
5/31/2018 16:12:0222FluidCaucasian
Cognitive, physical, both chronic
Lesbian, I present as a woman most of the time
Most of the time I just can't go to rallies, I can't call offices at all, I'm lucky if I feel good enough to get out and vote.Disability, gender sexual minorities, feminism, global warmingRallies and even meetings are often hard to get to. Most of the rallies I find are outside, and it's next to impossible to wheel an old, heavy wheelchair that doesn't fit along tile, let alone rough concrete and uneven sidewalks. Plus heat makes me flare, so being outside for long periods of time is impossible. Travelling far is hard for me. Some buildings have no accessibility at all. Bathrooms and seating are a huge deal. I've been to activities that have little seating, and if I have to get out of my wheelchair to get into a building, I don't want to put in the enormous effort of getting up stairs or whatever restricted me and find out there's nowhere for me to sit. I just have to leave at that point. Bathrooms are usually not mentioned, if the group has access to it. They're important, though, and it's especially important when you have a wheelchair you have to take into the bathroom with you. Bathrooms might have the "accessibility" sign on it but that doesn't mean that disabled people can actually access them. I've had so many bathrooms where I can't even open the door without help, let alone have enough room to turn my chair around to lock it and stand.Usually indoor rallies are the easiest for me. Somewhere with an elevator and a ramp, or on the ground floor, with air conditioning. I've been to a [removed per request] and they were very accommodating by having people move out of the front row so I could see despite when people stood.I'm afraid to go most places where I would be in danger. You see protesting people getting hauled out of their wheelchairs or wheeled out on the news and I couldn't deal with that. I'm sure I've been spaces where I'm safer than someone of color would be, just because I'm white.If you can hold it inside, do it. It's easier for people. Make sure there's lots of spaces to sit for those who can't bring their wheelchairs in and have to walk up stairs so they don't have to arrive and realize they have to stand. It makes them leave because they can't stand for the entire thing. Providing snacks and water can often help. Make sure bathrooms are easy to find and accessible to wheelchair users (and I mean actually accessible not some of the bullshit bathrooms that have the accessibility sign on it but you can't even wheel in without bonking your knees on everything. If you can't get an office chair in the bathroom and still have enough room to stand up straight and turn around comfortable, it's not accessible.)
Yes, with specifics removed
Yes, with my nameYesAme
6/3/2018 10:50:4621FemaleWhite
Chronic physical illness
Bi, paganI can't go to stuff because of the painDisabilityNot me personally, but I've seen many feminist rallies are inaccessible for people with wheelchairs and deaf/HoH people get refused accommodationsA rally was moved once it was pointed out it was being held in a wheelchair inaccessible areaPaganism is very welcoming of spoonies IME and people are very willing to make accommodations for youWheelchair accessibility. Interpreters for deaf/HoH people. Captions for online videos/images. Large print or Braille available for blind/visually impaired. If food is being served, be specific about what it is for allergies and other medical conditions. Places for people to sit or take a rest even during walking rallies or standing protesting somewhere. No shaming of people for being unable to attend. Ways for people unable to attend to show support via hashtags, numbers to call, donations, online posts. Quiet areas set aside if it is an especially noisy or crowded event for people with psychiatric disorders related to this. Inclusion of disabled people in campaign pictures like "Everyone is beautiful" or "This is womanhood". Locations accessible by public transportation like the bus or ride-sharing options available for those without transportation (some people are unable to drive due to their disabilities and find difficulty getting to rallies because of this). Including disabled speakers to speak for intersectionality of disability and activism rather than abled speakers.YesYes, with my nameYesRuna
Disability is one of the largest minorities but one of the most overlooked, especially when it comes to activism. People are shamed for not being able to attend when they're in too much pain or are just plain unable to support because no one thought having the rally in an upstairs loft that doesn't have an elevator would be a bad idea. Disability needs to be included in your activism or you're leaving out so many people who would want to be with you and support your activism.
6/19/2018 14:54:3330GenderqueerWhite
unpredictable chronic pain and fatigue; low stamina for walking, standing, writing; anxiety/depression
JewishI cannot participate in campaigns which are primarily centered around marching or picketing. I cannot hold a sign for a long period of time. I may cancel unpredictably due to a flare-up of my condition, which makes me unsuited for certain types of activism as well. queerness and trans rights, disability rights, fighting antisemitism and exploring leftist jewish identityI assume I'm not welcome, or not needed, in most campaigns because my physical presence is not reliable and they need strong bodies holding signs. Groups arranged by and for and about disabled people don't run into these problems as much, but they often meet midday on weekdays when I [removed per request].I write online and otherwise participate in social media, and sometimes participate in phone campaigns calling legislators using tools like resistbot. Yes. Being genderqueer or nonbinary and disabled is a very common circumstance and yet people aren't prepared for it.
(removed per request)
Yes, with specifics removed
Yes, but without my name
6/19/2018 14:55:3422QueerWhiteAll of the above.
Genderqueer, bisexual, poor
I've had to give up on in-person activism because people refused to make organizing accessible for me. I couldn't rely on fellow organizers to keep their word about making action safe and accessible. This is both for radical organizing and nonprofit organizing. They can't even be bothered to make sure there aren't stairs, and I don't have the energy to do everything myself to ensure I can participate. Disability activism (mostly online), anti-war, anti-racism, anti-poverty, LGBTQ+Stairs, expectations to stand, expectations to be able to walk long distances, ableist rhetoric and disregarding me when I refute it, expectation to be able to read massive amounts of literature. Online activism, activism in accessible spaces, provided seating, provided transport, avoiding conflating bigotry with mental illness, listening to disabled folks, making sure to have "safe" foods for people with allergiesAlong with inaccessible spaces, many local organizers prefer spaces that are expensive. Too many types of activism near me, especially for nonprofit work, are at expensive restaurants that I can't afford. Listen to disabled people. Ask them what they need. Check to make sure there aren't stairs and that elevators are working the day of the action or event. YesYes, with my nameYesRys KV
My pronoun is "they", in case that's needed.
6/19/2018 15:06:4127
Cisgender woman
Caucasian, Irish to be specific
Autism, Ehler's Danlos syndrome, asthma, hypothyroidism, sleep apnea, IBS
I'm queer (bisexual, demisexual, greyromantic)
They make it much harder - or rather the ableism and exclusion and lack of accommodations for them make it much harder.I used to run an ASAN chapter, I now work with Autistic Minority International to speak at U.N and WHO events about autistic acceptance and inclusion.No clear instructions or directions, many physical and sensory accessibility barriers, rude condescending people, classism and inability to participate without academic degrees and excessive funding.None. I burn myself out trying to participate and suffer after. That's not what I'd call working. Organizers don't give a shit about autistics.YesNot all disabilities are visible or physical. Consult actual disabled people -- especially those with cognitive & psychosocial disabilities who are often forgotten.YesYes, with my nameYes
Alanna Rose Whitney @alannarwhitney on Twitter
Can't think of anything, low spoons from just returning from a very inaccessible conference of states parties at the U.N. and civil society briefing on the CRPD in New York. Follow up is okay if I wasn't clear enough or whatever - by then I should have more spoons.
6/19/2018 15:32:14early 20senbiemixed latinxphysical, chronicbeing constantly sick means that I have to cancel things a lot, while there are others things I say straight out I can't do. No matter how often I explain, or suggest things I /can/ do, people take my unreliability and lack of abilities to be evidence that I just don't care enough.House of representative campaign, human rights abuses relating to immigration, and things on a local level (my town and/or my campus).Ableism by others; both lack of consideration for my abilities and limits or outright excluding me because of them. I have received criticism for not "getting better", "trying harder", or "working to be more reliable". The biggest criticism I receive is being physically slow (I have trouble walking).Phone banking, online discussions, petitions, voter registration drives.I have frequently found that an organization is accessible on a racial, queer, or disability level -- sometimes two, but never all three. My privileged economic class has helped mitigate this somewhat in some cases; in others, it actually makes it worse, because people assume that I can somehow "pay" to make the space more accessible. a) include accessibility information along with the rest of the information for your event -- don't say "click here for info", just put it where you put the rest. Show that you think of accessibility as a standard part. b) provide contact info for people with further questions/concerns c) if someone has an accessibility concern regarding your venue/activity/organization, it is not their responsibility to make the space accessible -- it's yours. You're planning this, and that means planning for all of the participants, not just certain demographic categories of participants.Yes
Yes, but without my name
PS: at the beginning of the survey, you said "I've done my best to make this survey a safe space to share your story, but I'm certain I have blind spots." I've heard people say that they find casual use of their disabilities as metaphors/figures of speech to be hurtful, because of what it says about the disability itself. I'd suggest changing your wording here PPS: thank you for taking the time and effort to create a survey and look through the responses!
6/19/2018 15:52:5026GenderqueerWhite BritishAutistic, bipolar
Openly polyamorous and bisexual, cis-passing "woman", from a privileged background but that's all gone to shit now
It's hard for me to reliably commit to things as my mental health is currently unpredictable, which is really hard in small groups as the effect of me pulling out can be huge. It's hard for people to understand that I'm not just flaky and it can affect my relationships. The sensory environment can be a big problem, as well as unfamiliar places and people. I also get pain from standing still too long, so static demonstrations are very difficult. LGBTQIA+ issues, especially trans and more marginalised identities; energy and enviromentalism; politics to a certain extent because of the aforementioned everything going to shit. Like I'd really like to not have to focus on politics to survive but here we are.I've experienced a lot of ignorance at the kinds of things that would make things easier for me, even from people who otherwise have fairly good understanding of physical access needs. If accessibility is considered, physical disabilities usually take precedence, which is fine but can make things inaccessible or more difficult for me.Small groups of understanding people and spaces that have been organised with autistic people in mind. If people think of it, it usually goes fairly well! A quiet room with dim lighting and soft furnishings that I can escape to, especially during longer events is so helpful. The room being described beforehand would be incredibly helpful, though it's more important to only give details you're sure about and not change things. I was once so excited to attend an event with a well-described quiet room that was not all how it was described, obviously having been thrown together at the last minute after I asked about it. It felt like it wasn't taken seriously as an access issue and made me feel worse than if the room hadn't been described at all. Schedules and agendas that I can look at beforehand and choose where to spend my energy on any given day are really helpful too, and the ability to be able to dip in and out of these without issue. In terms of gender, gender neutral toilets/changing areas are great. Yeahhh. I run spaces that are queer and disabled focused because it's been hard finding a properly comfortable space otherwise.Please remember that autism exists! I might have quite different and irreconcilable access requirements to other disabled people, but a) you should provide enough information for me to decide whether the space will suit me (sensory levels, timetabling, space, ability for me to bring a buddy, etc.) and b) be open to talking about how you can balance the accessibility requirements of your attendees.Yes
Yes, but without my name
As someone who tries to organise more accessible activism spaces, I'm keen to find out(/discuss?) your thoughts/findings
6/19/2018 17:14:5920Nonbinary girlFilipino and Chinese
Hypermobility spectrum disorder, dysautonomia, some sort of neurological issue (we don't know what it is yet), schizoaffective disorder, OCD, BPD, PTSD
I'm bisexualI often don't have to ability to go out and participate in protests or marches due to pain and lack of energy. Crowds also make me very anxiousLGBT and disability rightsI was more active back when my mobility wasn't impaired and when I had more energy, so I haven't encountered any barriers because I haven't gone to anything lately. I used to participate in the Los Angeles AIDS walk, and I think I would be able to go to that and other marches if I had a wheelchair since they're usually on flat pavement (but I don't have a wheelchair, sadly). Being offered food and water makes those sorts of outdoor events a lot better.Yes, I can't really go to Pride because it's too high energy of an activity. And a lot of queer bookstores tend to be small and inaccessible in that there are steps everywhere and no way to access them in a wheelchair. And if I'm not using a wheelchair steps are still hard since they're painful on my joints and I'm afraid of falling down them due to my cataplexy.Make sure the are area is wheelchair accessible, that's the bare minimum. You should also have places for people to sit and rest, and provide water if it's an outdoor physical activity like a march. Yes
Yes, but without my name
6/19/2018 18:05:2356FemaleCaucasian
Physical; chronic; mental illness
Lack of access when it comes to physical protest, ie I am often unable to participate because I cannot stand or walk for long enough. Conferences are often not designed to allow for breaks that will keep me from developing excessive pain from being in one position for too long. Accessibility issues on a municipal level. Political activism provincially and federally, and feminist issues.Sometimes there is an expectation that I will have disposable income (I do not). For instance, at a disability forum I was registered to attend, I received an email a couple of days before, asking everyone to dress a certain way in support of a cause unrelated to the forum. I wrote back pointing out that I did not have the financial means to fulfil the request, and that this would single me out. My email went unanswered.Often activism that is centered around disability is more accessible for obvious reasons. Volunteers to aid in getting around physical barriers, awareness of possible physical limitations etc. are more common.Please take the time to view your space/schedule with an eye to those with physical, cognitive, or neurological limitations, or have it viewed by someone who may spot problems with it before you have your event.Yes
Yes, but without my name
(removed per request)
6/19/2018 21:18:2557FemaleCaucasion
Rheumatood arthrytis
ObeseLimited standing snd walkingCivil rights womens rights pascifism environmentAccesible venues. Standing marching critcism for bringing walker or wheelchairOk with walker. Ok to sit and cheer others onNo longer asked to lead as my mobility has decreasedThink inclusivelyYes
Yes, but without my name
(removed per request)
6/19/2018 22:45:3727cis womanbritish
eds3 causing chronic pain, fatigue, dislocations; depression/anxiety
queer with jewish heritage
unable to go to eventsinequality in all its forms"accessible location" which had stairs at its only entrance. marches are impossible for me, i just cannot walk for any length of time, or deal with a huge number of people at once. and yes, most definitely, i was made to feel guilty that i did not go to an event at the "accessible location"sharing information online, donating when i can to charities and organisations. having an accessible website helps hugelybeing queer and disabled means i tick a few diversity boxes, but i have been told to [removed per request; hide one or the other] because i should only be one or the other and not both. thoroughly explore your location with someone in a wheelchair, and listen if they say they cannot fit through a door on their own, or that the step is too high. speakers should have sign language interpreters by default. check font size for any printed materials.
Yes, with specifics removed
Yes, but without my name
6/19/2018 23:43:4018Non binaryWhite as snow
Chronic, psychic (which leads to physical sometimes)
Being non binary makes me a trans person so I'm starting to Learn about intersection between my gender identity and my disabilities
Can't go protest cause I can't walk for too longFeminism, lgbt+ rights, handi rightsNot being able to be 100% there bc needed to rest, they told me I wasn't really an activist, that I should go out and walk but I can't.
In things such as pride not a lot of things for disabled people or it is for people in wheelchair only. Makes me wonder if I'm gonna go to pride this year.
In a self defense group there was everything organized to rest if needed and it was ok to not do some exercises. She always asked her at the beginning how we felt and reminded that it was also a place for disabled people and that if we needed anything we should askYes, you get a lot of ableism or psychophobia especially when you're non binary or when you can't transition, knowing that I am also disabled makes it even harder. I feel very unwelcomed as someone with disabilities. No one thinks of us, I always have to.remind.people that we existsMake accessibility one of the top priority bc its too easily forgottenYes
Yes, but without my name
6/20/2018 1:45:3621FemaleWhite British
Physical and (undiagnosed) cognitive
NoI use a wheelchair, so venues must be wheelchair accessible. I have undiagnosed Auditory Processing Disorder (APD) and get very overwhelmed by lots of noises, so I need to wear ear plugs/noise cancelling headphones in public places, especially if there's a lot of noise; I also find it extremely difficult to follow a conversation (lecture/talk/demonstration etc.) if there's background noise.I am relatively new to being disabled and so I'm not currently involved in disability activism; however, this is definitely an area I would like to be involved in.As I am new to both disability and activism I have not yet encountered any specific barriers in accessibility. However, when reading about events/activities that I might like to be involved in I have always thought about the accessibly and what accommodations I would need to ask for. The uncertainty and ambiguity around what makes a place 'accessible' puts me off as I know that I would need to do extensive research and telephone (something that causes me a lot of anxiety because of my APD) the venue in advance to discuss the accessibly. As I have not been directly involved in any activism I am unable to answer this question.As I am female (and young) I feel like I need to push more for what I need. This can be directly related to accessibility, or it can be related to independence - for example, in train stations/airports etc. members of staff (usually, but not always, male) often start pushing my wheelchair without greeting me or asking my permission. This is especially scary if I am on my own at the time. They also carry/pull my bags for me without asking and ignore my protests (this may seem 'chivalrous' or 'gentlemanly' but I usually have my bags strategically placed for balance/center of gravity etc. It also undermines my independence - I am perfectly capable of carrying my own bag and if I wasn't then I would ASK for help).1. Male sure the venue is wheelchair accessible. This is the bare minimum level of accessibility. This includes having NO steps, or having a ramp/elevator that is suitable for a wheelchair user (i.e. not too steep; large enough for a wheelchair user and anyone that might be accompanying them). Ensure that doorways are wide enough for at least a standard size wheelchair. Make sure there is a disabled toilet that is actually accessible.
2. Provide speakers with microphones that can connect to hearing aids/personal FM systems. Provide a qualified sign language interpreter and make sure they are visible to the audience. Provide visual indicators of timetables, locations and any changes that may occur on the day.
3. Provide a 'Sensory Space' for people with Autism, anxiety etc. to use whenever they need.
4. I am disabled, but I am only one person. I can only give advice based on my own needs and those of close friends/family. To ensure your activity/event is truly accessible speak to a wide variety of disabled people (cognitive, physical, chronic etc.)
Yes, but without my name
6/20/2018 3:55:5623Genderfluid
White and ethnically Jewish
I have an autoimmune disease, a joint pain disease, fibromyalgia, and tachycardia. I require a cane for mobility.
I’m openly bisexual and both ethnically and religiously Jewish.
I have a difficult time participating in marches and protests that move. I have before and sometimes I’ll meet them at a certain point in their march. Another time, a marshal for a protest had to find an accessible route and the main organizer of the march personally apologized to me that the march was not accessible. I’m one of the only students at my university that uses a mobility aid, so they were entirely unprepared. Marches are just too long and involve too much walking and standing for me. I understand that’s for maximum exposure but disabled people want to be involved too. It’s not good or intersectional activism if disabled people can’t get involved too. I’m very involved is disability activism. Otherwise, I am involved in activism for LGBTQ+ people, Jews, and Romani people. I am also involved in genocide awareness. I’ve experienced mostly physical barriers. Marches like to walk across our town or go up stairs and those are things I can’t do. One march I participated in wanted us to walk up four flights of stairs! They are inconsiderate that disabled people partipate and there are invisible conditions. I have pushed myself before to be more physical than I should. Some of the main people involved in organizing social justice events here have made comments (not directly to me) about the morality of people who don’t participate and I feel included, even though it’s not that I don’t want to or don’t care, I simply can’t do what’s asked of marchers. I like when there are protests that stay in one place! Don’t move! Just be loud in a prominent location. Don’t make us walk up stairs, take accessible routes because those are also usually longer anyway. I’ve had a marshal take me on elevators before to make sure I can still participate, but that’s honestly embarrassing to have to be escorted around because people forgot disabled people exist. I also appreciate when non-moving protests are in locations where I can sit, whether chairs are available or even a low brick wall. For me, not personally. I mean, people don’t believe that I can be bisexual and physically disabled sometimes. People in progressive spaces are antisemitic often. But these things don’t affect my ability to participate based on my ability level. If you know disabled people, especially across a variety of conditions (physical, mental, developmental, etc), contact them! Ask them how to ensure that your activism is accessible! And if there’s disability related activism occurring around you, attend it. Be inclusive and learn straight from disabled people. We always have low attendance to our events about ableism and people always speak over us (at my university). YesYes, with my nameYesChayyim
If you could use just my first name, that’d be swell. It’s hard to pronounce so it’s easiest for people to say Ky-am.
6/20/2018 6:05:3043
agender (AFAB though if you care)
Physical disabilities & chronic illnesses
AsexualI've been homebound/bedridden my entire adult life, so all my activism is either online or phone stuff. It gets erased entirely, for a lot of people (ie people think if you can't go to marches, meetings, etc. you're not doing "real" activism. fuck them)I do a lot of activism around homebound/bedridden people, because even within disability activism that's basically an unknown area. Nobody thinks how to make things accessible to people who can't BE there.Like I said, mostly the barriers are that people don't feel like non-present people count at all. Here's an article I wrote about involving homebound/bedridden folks in physical get-togethers (it was written in 2013 so the tech is a little outdated)'ve gone off on my own and done stuff like writing this: and I do a bunch of online stuff like peer-to-peer support, running Facebook groups, etc.I'm lucky in that I'm relatively intact in terms of thinking and communication and learning. Most homebound/bedridden people are impaired in those areas which makes online stuff much less accessible for them which is a catastrophic because well ... it's the only thing I can do. I'm very aware that when I speak for homebound/bedridden folk I speak for those who are impaired in those ways too.BEING HOMEBOUND/BEDRIDDEN IS A THING. We count. We matter. Include us wherever you can!YesYes, with my nameYes
Ricky Buchanan,, @jeshyr (Twitter), (Feel free to use any/all of it)
I would freaking *love* to talk about this more. Like I said, nobody talks about this group!
6/20/2018 6:24:4436Cis womanWhite
Chronic migraine (severe), anxiety
I'm queer. Migraines often present a challenge to participating in rallies / events, or even meetings. I get worn out very quickly and have a lot of migraine triggers that add up in crowds, so it can be hard to participate in large groups unless I'm having a particularly good day.I feel very strongly about a lot of areas: Black Lives Matter / anti-racism, immigrant rights, disability rights, anti-poverty, gun control, women's rights, the environment (it's a lot, I know, I'm queer, I have a lot of feelings, okay?).There's been a really wide range of accessibility that I've encountered. At the recent march [removed per request], it was pretty accessible for me, but I'm also not a wheelchair user - I noticed NO ONE there using a wheelchair, which I found totally bizarre. Getting into the march required [removed per request], which is something my body is able to do.
I was really pleased at (removed per request) to see that there was an online march, for people who could not participate in person. I was amongst them and was happy to join an online community. I wish it had been promoted a little more, but it was still really nice to have the solidarity.
I have also had to drop out of activism spaces because of inaccessibility of the meetings. I had tried to join a [removed per request] group where meetings included food, and I have several scent allergies (including to foods). I asked the organizers about some accommodations and they sent an email to the entire group [removed per request; email was passive aggressive and not accommodating]. I never came back.
I've mostly stuck to phone calls, online petitions, and online communities. The more with other disabled people, the better. I'd love to be a little more out in the real world but to be honest, I'm so sensitive to light, sound, and smell that it's just safer to be at home.Everything about my identity is fairly invisible except my whiteness, which certainly affords me a lot of privilege - people don't know about the migraines, my queerness is fairly under the radar to non-queer folks, etc. I'm not sure if that really answers your question?There are all kinds of ways to create accessibility. It's incredibly important to make a space accessible to wheelchair users, of course, but it's also important to think about other kinds of spaces: smaller group activities, spaces that are scent-free, or that otherwise accommodate sensory needs.
Yes, with specifics removed
Yes, but without my name
6/20/2018 10:50:2222Female
Caucasian half Latina
Chronic Migraines, cerebral palsy
Accessibility is the most important way that my disability affects me being able to parttake in activism. I need locations to be wheelchair accessible. Disability rights
Refugee rights
Inaccessible places. No disabled toilets. Too loud noises/bright lights.

They do limit my ability to take part. I feel that organizers often forget about disabled activists and are offended when inaccessiblity is pointed out
Online activism mostly
Making physical locations accessible with ramps
Include disabled people in your activism! If we are not included your activism isn’t complete.
Yes, with specifics removed
Yes, but without my name
6/20/2018 10:56:5728cis womanwhite
chronic cognitive and chronic physical
het passing as I'm married to a cis man but I identify as queer or bisexual depending on who's asking
physical pain and sickness prevent outings, anxiety and depressed outlook on life prevent speaking out. I find it very difficult to argue my stance one on one or in a group because of brain fog, dissociation, anxiety.Chronic illnesses, invisible illnesses, disability rights, immigration and refugees, woman's rights, transgender rights, classism and poverty, Black Lives Matter, etc.While I do not receive direct pressure/criticism, I feel subject to passive aggression and passive pressure from online comments that speak on "if you aren't here, you're not really with us" sort of mindset. Passive pressure about just talking with one individual about your beliefs is not enough to change the world.I've only felt comfortable speaking out under an alias online, speaking to those I know, speaking out disagreeing family.I recognize that statistics are skewed due to the lack of representation and access to diagnosis. I have the privilege of being white, being cis, and passing as het so I do have an easier time with dialog in activism as I am not immediately judges for looks and lifestyle.
Yes, with specifics removed
Yes, but without my name
Yesnone please
(removed per request)
6/20/2018 11:03:3720
cognitive, physical, chronic, mental, learning, invisible
queerThrough orginizations, and through speaking out ageinst systems. value of facts, disability rights, disability autonomy, de-medicalizing, neuroatypical rights, queer rights, trans rights, youth rightsI am incapable of attending rallies, riots, occupies ect. safely. Instead of having my boundaries respected I'm bombarded with "have you trieds" and guilted for not participating. I also work slower, partly because I NEED to fact check information from multiple reliable sources, and I tend to be harassed for 'doubting' information that's considered obvious when I bring up facts that conflict with the quipy lines. Though fact checked issues with proposed solutions brought without screaming in front of the relevent forces. Bathrooms. Gender neutral bathrooms being gatekept by the disability community. Diagnosis focused activism and diagnosis elitism have transphobic forms. 1) none of your bathrooms should be gendered or otherwise for certain people only. 2) diveristy quotas are harmful 3) fitting every diversity category is not only an unreasonable prerequisite it's impossible for any single person. Yes
Yes, but without my name
6/20/2018 11:09:5221Trans man White & Cherokee
Aspergers syndrome, borderline personality disorder, bipolar disorder, chronic migraine, FIBROMYALGIA, asthma, anxiety, ptsd, HARD OF HEARING
Transgender, queerMany conferences and events are not accessible (especially old buildings and outdoor gatherings) Accessibility, lgbtq+ rights, autism acceptance, invisible illness acknowledgement, access to opiods and medical marijuana A lot of pressure from not participating, No captions/interpreters, not wheelchair accessible buildings and venuesLarge events hosted by universities are often very accessible (Temple University's annual disability symposium), and internet activism is much more accessible than in-personMany lgbtq+ events are not accessible and have caused issue with attendance, acceptance, and representation Have ASL interpreters and captions on all videos. Make sure the venue is wheelchair accessible (including accessible paths, bathrooms, and seating) YesYes, with my nameYesQuinten Foster
Please let me know of any major events occuring that you know of, especially those that this info will be used at
6/20/2018 11:20:4925woman white af
ehlers danlos syndrome, ADHD, pots, chronic pain
queer, non Christian I have to use my rollator, and I usually have to leave marches early due to pain/injury/difficulty breathing. if it's too early in the morning I can't go because it takes too long to get ready and have my meds kick inlgbtqia rights, anti racism, access to health care, wildlife conservation, and veganismsometimes the entire protest was just one big March that I couldn't finish, ended up separated from people I know. when I have to leave early, I don't get criticized for it, but i feel so much guilt about it.

poor location design, like at pride (kinda activism, I know it's a party) i fell off a curb because nothing was accessible by paved sidewalks. I fell on top of my rollator and now have giant bruises on my legs.

I also have difficulty signing paper petitions. my condition makes holding pens painful, no real answer for that, but a legit complaint
keeping them at one paved location, like in front of my state's Capitol steps, not having it be super early, and by having audio equipment so I can hear the main speaker.idk. I guess I sometimes pass as straight and/or abled due to my ageno more marches, I want to participate, but I can't marchYesYes, with my nameYesMegan
I know I wasn't the clearest, so feel free to contact me on any clarification
6/20/2018 11:29:4819Female White
Sensory processing disorder, generalised anxiety disorder, major depressive disorder, chronic sinusitis, chronic fatigue, undiagnosed adhd
Lesbian. Episcopalian. I can't attend protests or any sort of large-group activismimmigration, Deaf/HoH, religion, language Calling, online activism, small group, education, person to person are good Yes. Many queer advocacy spaces are strongly anti-religion (for good reason) and vice versa. Captions.No
Yes, but without my name
6/20/2018 11:35:3240scis woman
Jewish, non-Jewish White people
gastroparesis, IBS, GERD, chronic intractable pain, depression, anixety, PTSD, undiagnosed dysautonomia issues, undiagnosed knee and hand problems
Pansexual, survivor of rape, SA, SH, Grandchild of Holocaust survivors
I can't go anywhere, so I can't go to meetings, training sessions, actions, protests, marches, or most events unless I have free transportation by car, and have some way to sit down and participate.Disability, Chronic Illness, Chronic Pain, Patient Advocacy, Women's Health, Mental HealthI can't march unless I get a power chair, I can't stand for even a short amount of time, this has made traditional activism practically impossible for me. Online activism, twitter advocates and activists support each other, amplify each other's voices, people make chats, hashtag movements, those who can go places share how they are able to do it with othersDisabled ppl were left out of the [removed per request] movement, until we all had to remind them disabled [removed per request] exist.
There is a lot of ableism in the LGBT community, as in a lot of communities. I can't participate in certain Pride events, I don't want to go to certain places that have turned away disabled people during Pride.
Please make things as accessible as possible so disabled activists can join. Make sure there is seating, have wheelchairs available if possible, provide captioning on video, ASL interpreters, just do everything possible to accommodate everyone.
Yes, with specifics removed
Yes, but without my name
(removed per request)
6/20/2018 11:56:43mid-20'snon-binarywhite
Adhd, dyscalculia, chronic hip and back pain, chronic intercranial hypertension/pseudotumor
Queer, trans. I am unable to attend almost any irl event because of my combination of disabilities. I frequently donate directly to activist groups, write, and provide awareness. I don't understand this question. If this means "which disenfranchised group(s) do you prioritize in your activism?" I reject it on principle because privilege is not a randomized points system for oppression. That level of thinking only creates aggression and in-fighting and inhibits solidarity.Specifically [removed per request] stated that no bags or outside food or drink were allowed. I could not bring a folding cane for mobility and water and snacks that I need to prevent dehydration. There was also nowhere to sit. The location of the festival was far away from public transportation. I was unable to attend because of this. We still watched the parade and that was accessible.[Removed per request] but it was too far for me to walk to. There was plenty of seating, areas to cool off in, the location was central to many public transportation routes. They allowed bags and water bottles and outside food. Providing online alternatives is the best option for me currently. In a general sense, if an event isn't accessible, I feel as though the organizers are saying that I'm "too disabled" to be of use for that group of activists in that situation. That being said, I don't think every single event needs to be, as long as there is an alternative (online donation pages, images to spread on social media, creating media and support through art and writing, sending letters to activists, etc) I singled out [removed per request] because it's supposed to be an accessible cultural celebration. Everyone should feel welcome at events like [removed per request].Most marches and mainstream activism leaves us with mobility disabilities out completely. Movements that ask people with adhd to read a lot of information are inaccessible. Movements that call people "dumb" and "stupid" are openly hostile to disabled people. We have different and conflicting needs, that either needs to be accounted for or we need to think of alternatives (like the ones I mentioned in the previous question, media creation, donation pages, things people can do from home) Even if your activism isn't explicitly about disabled people, there are some of us who want to go. If we aren't there, it's because it's not accessible.
Yes, with specifics removed
Yes, but without my name
Thank you for doing this. Everyone says "listen to disabled people's needs" but there are few out there actually asking.
6/20/2018 12:04:0621
nonbinary transgender
autistic & ADHD, C-PTSD, schizophrenic, probably bipolar, all kinds of dissociative (including non-pathological multiplicity), dyscalculaic. Ehlers-Danlos Syndrome, fibromyalgia, chronic fatigue syndrome, scoliosis. probably polycystic ovarian syndrome.
multiply & visibly queer (i refer to myself as bi, queer, aroace, wlw, mlm, all over the place), lower middle class (i have access to a college education, albeit thru scholarships, and have steady housing, but our financial situation is tenuous at best). i don't have access to all of the medical care i need, esp.: i don't own my own wheelchair. i'm also fat.
a Lot. i'm not really able to go out and Do Things - i get the sense i would be able to do more with a wheelchair, but that's not available to me right now, and even then, being outdoors and being in big crowds is not something i can sustain for very long. on the other hand, even just talking can be hard for me sometimes - i'm a semi-verbal autistic and i also frequently struggle with my words making sense, due to schizophrenia and brain fog from my chronic illnesses.mostly disability (especially on the topic of ldc disabilities - learning / developmental / cognitive - incl. autism, adhd, schizophrenia, learning disorders, etc) and queerness. feminism is at the core of basically any activism i do. in the past few years i've been exposed to greater degrees of anti-racist practice and i've been working on making that a more significant part of my activism.

i'm especially interested in intersections (my academic focus is on the intersections b/w disability + gender / queerness + race.) recently i've been interested in "old-school" radical disability activism (ex: the now-defunct zine Mouth Mag).
a lot of workshops & conferences have an extremely stringent schedule - you have to wake up early and keep going without breaks until late in the afternoon. i'm generally only capable of doing strenuous things (esp when performed in a room full of lots of people, very loud, and often w/o proper access for mobility-restricted folx) in small bursts, and even then, only a few in a day - it makes the idea of participating in these things (even if i really really want to!) nearly just as impossible as it would be to actually do so. (i can't even consider going to things like outdoor protests.)i moderate / contribute to multiple advice blogs (for trans / queer kids and for disabled kids) and contribute to the disability activism community most prominently, typically online. i do a little bit of activism work at my school and i'm involved in starting up a social justice training program there as well. doing online work suits me because i'm very good at finding and disseminating information accessibly and because i have as much time as i need to formulate and share my thoughts; it also doesn't require much physical energy from me and i can do it when bedbound. when i've participated in social justice workshops at school, they have been low-population (iirc we had 14 people) and held in short, less-than-2-hr bursts in a small, familiar, comfortable room over the course of an entire semester. that was a really valuable experience for me and i'm hoping to participate in more like it.

don't use ableist language - if you think that request is silly, then you haven't done enough research on what ableist language is and means, or what ableism itself is and means. generally i don't take an activist seriously if they use ableist language and don't appear to care or be aware of what they're doing - it means that anti-ableism is not their priority and i don't care to engage with that kind of activist.

closed captions are really good. schedules are good. opening up alternative methods of communication (i.e. email) & being familiar with many methods of aac (alternate / augmented communication) is good. considering that the pace of life of abled people is not a pace that many of us can keep up with is absolutely vital. trigger warnings are good - learn how to properly and casually implement them and DO IT.

further - be familiar with the activism that the disabled community has and continues to do over the years. respect & uplift that. i'm pretty tired of people being "impressed" or "inspired" by the little disabled activism they've managed to see out of the corners of their eyes.
i'm White and i know that means a lot of my accessibility requests are taken more seriously. i'm also not visibly disabled aside from my mobility aids which contributes to the fact that that, if i bring up complaints of ableism, people are likely to respond defensively (sometimes dismissing me outright, sometimes saying "i didn't know you were x! / needed x!" as if that absolves them of what they've done.)"playtest" - have someone who is actually mobility- / visually- / hearing- / cognitively- impaired go thru the motions of the activities & environment you're planning to provide. get their feedback and listen to it.

research anti-ableism and anti-ableist environments and accessibility measures before you even begin to advertise your program / space. then when you do, give us access to information detailing what you have done to make this an accessible, anti-ableist space & experience. (imo this should be done for more than just ableism, but i think it's most salient to ableism, so.)
YesYes, with my nameYesRen K.
nope, though i'd be interested to hear if there's anything i say that you do use!
6/20/2018 14:24:1321MaleWhite
vEDS, Addison’s Disease, Autism, Gastroparesis
TransgenderLimits it significantlyDisability activism, Autism support, Transgender rightsInaccessible locations, long travel distances that are not possible to get to the location, criticized for being an armchair activist and not being truly involved for not being out on the ground and at eventsChoosing a location that isn’t too far away and is accessible for everyone, communicating activism and protest through the Internet and social media, organizing safe spaces (ex. chat rooms) to talk about issuesYesIf someone approaches you with an accessibility request then please do your best to make it possible because it can make the difference in someone being able to attend or not or feeling safe or not.
Yes, with specifics removed
Yes, but without my name
Accessibility can also include sensory issues and considerations.
6/20/2018 14:39:4334WomanCaucasian
Chronic mental illnesses, chronic migraine, chronic dysautonomic stuff, which includes cognitive limitations (always baseline limitations, can be very severe based on other stressors) and physical disability (ambulatory wheelchair user) and occasional pain
Queer, specifically bisexual; PhD; married; unable to work and ineligible for social security disability
They make me more invested in activism, give me more time to learn about issues, support individuals on social media and speak online about issues I care deeply about (disability rights, mental health coverage and visibility, queer politics and the intersection of all of the above). Conversely, dysautonomia makes it very difficult to physically participate in events outside the home. disability rights, mental health coverage and visibility, queer politics, suicide prevention, invisible disability awareness and the intersection of all of the aboveI have difficulty sitting up and regulating body temperature, especially when it’s hot. The ability to park near a rally and bring my own reclining chair is very helpful. So is having access to water and wheelchair accessible bathrooms. I haven’t had any external criticism, but feel guilty that I can’t do as much as I want—particularly that I can’t often be physically present or call representatives on a bad, brain foggy day. Honestly, it’s largely been me being loud on my own, which probably isn’t the most effective thing. Absolutely, but fortunately in a positive way since most of my advocacy has been online. There’s a large, vocal, supportive queer/chronically ill community on twitter, especially with POTS/dysautonomia that advocates for the intersection of those identities Please remember that disabled folks are devoted advocates too! ALWAYS providing accessibility information is so useful, even if you aren’t able to secure accommodations for one event. Also, reach out and ask what accommodations advocates in your area need instead of guessing, or consider bringing on an accessibility coordinator to focus on inclusion of these groups. There isn’t a one size fits all solution and everyone being flexible and patient goes a long way. YesYes, with my nameYesLiz Droge-Young
Feel free to also contact me for more info!
6/20/2018 14:49:1620nonbinarywhite
brain stem migraines, mental illness
LGBTCan't participate in marches because I can get stuck in the heat and cause a flare up of my brain stem migraines. Anxiety makes it difficult to be an activist too because of violating social norms.racial equality, LGBT rights, disability accommodations, poor vs rich inequalitycan't get to marches or town hall meetings because of my disabilities and I have been looked down on for it. organizers do not offer solutionsposting online, talking to peers about social issues and helping educate them about things they had thoughts about without any justification. no organizers involvedyes, my LGBT status makes it even more dangerous for me to be in a place where arrests might be made because of discriminationplease remember not everyone who believes in this cause is physically able to go and don't shame us for that
Yes, with specifics removed
Yes, but without my name
6/20/2018 16:19:1124GenderfluidCaucasian
EDS, myalgic encephalomyelitis, neurodevelopmental disorder,
I’m pansexual and genderqueer
I would love to be able to be out in the streets more, as is i’m Only able to participate mildlyDisability rights, lgbtqia rights, the rights of people of colorMany of my local pride parades are inaccessible.I donate, send letters, fax representativesOften people forget that disabled people are often lgbtqia, and that mentally ill people and the physically disabled experience similar discrimination.Please make your events accessible!!
Yes, with specifics removed
Yes, but without my name
6/20/2018 16:54:4627girlwhite
EDS, CFS, fibro, chronic bursitis
Poor, disabled (mentally and physically), fat, bisexual, woman
I use my art to spread awareness and help disabled people feel good about themselves. I try to spread awareness where else that I can and talk to people about disability and rights but I can't really get out and protest.Mostly disability advocacy, feminism, LGBT rights, and I support the fight against racism, fascism, classims, transphobia, homophobiaI mostly participate online activism. I don't find protests very accessible Online activism has worked pretty well for meYes. Being fat and disabled means that I need a wider wheelchair and people don't often keep that in mind.Keep disabled activists in mind, not just wheelchair usersYesYes, with my nameYesOgrefairy
6/20/2018 17:29:2731WomanCaucasian
Multiple chronic illnesses, mental illness
Demisexual, middle class, well educated, unemployed, semi-rural
Limited energy and endurance, as well as difficulty travelling to venues or staying in them long due to no/terrible seating, no quiet rest areas, no food I can eat, late nights.Feminism primarily. Occasionally environmentalism and/or animal rights.Venues are often not easily accessible by public transport, have terrible chairs (or none at all), have no rest areas, no accessible bathrooms, are far from food (or if food is available it is rarely inclusive of those with intolerance). Other barriers are reliability; I find fellow activists are quite happy to exploit my capabilities and ignore my limitations. I have also been left "holding the baby" with activist workloads when fellow activists decide, suddenly, to leave halfway through a campaign, meaning their chronically ill/disabled peers have to either can the entire campaign or push themselves to breaking point to get it done. I feel there's a fundamental lack of understanding and genuine compassion in activist spheres as to what it truly means to be inclusive and supportive of disabled activists. Mostly online activism. Giving me the chance to work remotely is a help. I really appreciated the Sydney Mardi Gras's "Fair Day" - there were quiet spaces, bean bags everywhere for people to sit down, a variety of food and inclusive activities. Making events and venues as inclusive and accessible as possible means I am much more likely to attend in person.Yes. I am fortunate in that I have a partner/carer who drives me to many places and can get me close to the actual spot so I have to walk less. However, me not working means we're on one income and often struggle financially. The car, for example, is being sold this month to pay for my medication, so that will drastically impact where I can travel to. I live in a semi-rural area, and most activist events are in the city. We need more of those events to be in rural areas so country folk with disabilities can also participate.Make sure it is wheelchair accessible (and that the bathrooms are too!), not too far from a bus stop or train station, hire an Auslan interpreter if you can, ensure the venue is climate controlled (if possible), that the seating isn't going to destroy the backs of people with chronic pain, and make sure there are rest areas and plenty of helpers around. Lastly, if supplying food, give a range of options for those with allergies/intolerances/vegan.Yes
Yes, but without my name
(removed per request)
6/20/2018 18:16:4526femalewhite
physical, chronic illness, mental illness
asexualI don't have the energy to leave the house to do activism in person like attending meetings or demonstrations. I also easily get migraines in loud or crowded places so I can't attend a lot of things.disability activism, accessibility activism in higher educationmy university held a touring display about barriers and lack of accessibility on the second floor of the only building on campus without elevator access. When I finally made my way painfully up the stairs to the room it was in, no one that had set up the event even realized they had done thismy best experience was with an honor society for disabled students at my alma mater. I felt comfortable there because we all had some kind of disability, and we scheduled things in accessible spacesalways consider whether your events are accessible on as many levels as possible. On the most basic level it must be physically accessible to people with mobility issues and those using mobility aids, but you should also consider the needs of people with vision or hearing impairment that might not be able to participate without accommodation. Additionally an overstimulating or overly crowded event can be inaccessible for neuro-divergent people or those prone to migraines. Organizers should strive to take as many of these things into consideration as possible when planning eventsYesYes, with my nameYesSarah Babich
6/21/2018 6:37:0617
Nonbinary (they/them) [female]
White American
Chronic pain, mental health issues, Neurodevelopmental Disorder, ADHD
NahI can’t walk around for long periods of time or sit in uncomfortable chairs for long periods of time. I’m heat and light sensitive (pretty extreme for the sun) and I currently don’t have a wheelchair, so I can’t participate in things like Pride or marchs.Feminism, GSRM (gender, sexuality, and romantic attraction movement, aka LGBT+), the inclusion of aces, aros, agenders, and nonbinarys in the community of LGBT+.I haven’t really tried to go to anything because of how inaccessible it is, not to mention I live in the middle of nowhere so if I do want to go, I may have to drive to another state.N/ARemember that lots of people experience insectionality. If you don’t make your activist spaces accessible for *everyone* you are further marginalizing those people and cutting them off from the communities that are supposed to support them.Yes
Providing it goes alone with my story. Ie “this 17 year old enby experiences this and this is what they said to orginizers”
(removed per request)
I would appreciate a copy of the paper you’d be giving them, not just to check over my stuff but to read as a whole, if possible.
6/21/2018 15:31:5415Male (He/Him)Caucasian (British)A chronic conditionTransgenderMy condition makes me have unexpected 'flare-ups'. These can cause dizziness, pain, and fatigue. This has affected my activism because I need to know exactly what's happening and where to plan accordingly, just incase.My condition means I can't go very many places without first knowing the accessibility information of the venue an event will be held in, to decide if there will be a quiet space or a safe path out of a venue if I need it (whether there will be steps, bright lights, etc). This is a problem because most of the time, where I live, the person/organisation hosting an event, which I would otherwise want to participate in, will never include this information - assuming they don't need to. And even if someone asks for the information, it will probably not be given due to the hassle it will cause. This can place pressure on us 'spoonies' because we then need to decide if we should risk attending and potentially getting hurt, or skipping the event and being criticised for not caring about the event.To make my [removed per request] group more inclusive, now any event or meeting which will be held [removed per request] will have a detailed accessibility guide. There is also always a quiet space available should anyone need it. This is good because now the few of us who need to double check [removed per request; event frequency] to see if we can attend now don't have to, which takes some pressure off of us.I would probably just say for them to do their research. Find what's not accessible in an event/venue and either fix it or let it be known it's there, and don't sugar coat it. For instance, if you say something is fully accessible, don't only have stairs leading to a stage area, or not have disabled parking nearby, or a million other things I could write.
Yes, with specifics removed
Yes, with my nameYesCedric
If would decide to use anything I wrote in your talk please run it by me first, just so I know (preferably using tumblr but twitter's fine too)
6/22/2018 6:30:4522
Agender nonbinary woman
Cognitive and chronic physical
Crowd anxiety and physical disability keep me from being able to go to protests without either having panic attacks or being absolutely drained of spoons for the next two weeks.I reblog awareness posts and organizing posts for activism topics and events, I have been to protests but since stopped the nature of protests is inaccessible to me (and I don't think there's a way to fix that) but I have been criticised for not participating. Some organization posts are just walls of text, which I cannot focus on and process easily.Most organization posts I've seen have been formatted in a disability-friendly wayYes
Yes, but without my name
6/22/2018 6:37:2622Nonbinarywhite
fibromyalgia, cyclic vomiting syndrome, arthritis, mental illness
I'm a butch lesbianI am unable to participtae in marches or demonstartions that require walking/standing for long periods of time and i am not able to do phone banks/calls. lgbt rights, disabled rights, anti fascismmany activities are inacessable due to being marches/walks, online actionyeslisten to disabled folks when they ask for accomidations, plan routes for marches that are shorter and acessible for those who require mobility aids,
Yes, with specifics removed
Yes, but without my name
6/22/2018 7:17:3631
it's complicated
whitecognitive i'm trans and crazythey make it difficult to start or continue participating even if it's something i want to dofood not bombsYes
Yes, but without my name
6/22/2018 8:01:0439 11mo.
Agender they/she
Mostly white
Fibro, degenerative disk, autism, cptsd
Poverty. Master's degree. High school dropout, formerly homeless, former eating disorder, fat, queer, abused
I can't walk long because of my spine and ankle injuries, so marches are not great. Someplace with available seating would be awesome. Being around crowds is similarly not great, though the ones I went to in NYC (many years ago!) were in areas with coffee shops and such where I could escape and hide in a corner for a while. My wife and I live in a place with very few demonstrations about anything, most are pretty far afield. Being in a car that long, again, not great for my spine. Walking with a cane does mean I always have plausible self protection, though. I've done it if it meant enough, but the following few days I pay for it.Queer/trans rights, economic justice, womens rights, racial justiceMost of the pressure has not been from organizers, so much as participants who imply tgat people who dont go are bad and should be shunned, making no differentiation between can't and won't. I only go to protests where I know I'll have an easy way out whether because of physical limitations or mental, so I can't say whether that's their restrictions or mine.Calling/texting politicians, voting, some donating when possible, the texting app to find and contact politicians is great!Not that I am aware of. Anything with an entrance fee could though.If planning a march, place the route along a path where there are benches or raised borders, so.ething people can sit on if they need it other than stairs, which are not great, or the ground, which is worse for getting off of. YesYes, with my nameYes
Kit / deliriumcrow on tumblr
6/26/2018 9:12:4930cis female
White, Irish and Scottish origins
CFS, fibro, depression, anxiety, ptsd, sensory processing disorder, multiple chemical sensitivities, mostly home and bed bound, likely adhd
Biromantic and asexual, fat and extremely short
Too tired. Can’t get out, can’t march, can’t stand, can’t shout. Stay at home laying on the couch at almost all times. Can’t write online, too much cognitive fatigue, too much anxiety, too much executive dysfunction Feminism, ableism, queer rights, fat acceptance

I try to support anti racism where I can
I haven’t pushed back against inaccessible things like that because I don’t see a way to make it accessible Private internet arguments, educating people in my life, is about all I can do. So there are no organisersPeople think my physical limitations/disabilities are because of my fat, my mental illness because of my fat or my gender, my sexuality because of my history of trauma
Yes, with specifics removed
Yes, but without my name
6/26/2018 14:47:0333Non binaryWhiteCancer survivorQueer, Unemployed I don’t have the energy to do most activism projects that I come across.Black Lives Matter, trans activism in educationI often don’t put myself as a leader of a group specifically because I don’t have the energy/spoons to do it.They haven’t done much, but that’s often because I don’t make my disability known to organizers in most occasions. I don’t let them know because the typical response is pity or fetishizing my ability.I’m not sure. I’ll have to think on that some more. My cognitive abilities have been impaired by chemo, so I have trouble recalling things.Even if we might not speak up or disclose, we may come to your event, but continued involvement NEEDS to be conscious of ability. Honestly, it’s the first thing that I think of now, as I’m sure that others with different abilities may also be super salient for them.Yes
Yes, but without my name
My name is quite unique, so I’m easily identifiable.
6/26/2018 17:10:0621 yearsNBwhite australian
Autistic, ADHD, Ehlers Danlos Syndrome, fibromyalgia, anxiety
I am an ace-spec bisexual, family is solidly middle class
Because of anxiety and autism I find it very difficult to go to spaces I don't have a script for. Chronic pain and fatigue also limit how much I can physically do.Mainly queer and disability issues but I am only just stsrting to really become involvedUnfamiliar environments are very difficult for me and when there isn't much information Vailable on the process or what happens in certain spaces (e.g. clubs) I find it very difficult and distressing. It is also difficult for me if there are a lot of stairs and no lift option and/or if lomg term standing or physical confrontation is required or expected.Yes, I am never sure how accepting people will be of all of me and feel unsafe and on-guard because of thisFAQs are always good, more description of what happens in the spaxe would be helpful as well as listong ways people with different skill sets and limitations can get and stay involved. Explicit welcoming off other marginalised groups/expression of zolidarity would also be helpfulYes
Yes, but without my name
Thank you for doing this
6/27/2018 4:58:5444TransBlack
Neurological, psychiatric, chronic
Queer, parent, middle-class, tenured faculty
It can be hard for me to make cold calls without a script to legislators. When my moods aren't stabilized, trying to do anything is near impossible. More raising awareness, push myself to make phone calls. I use my teaching as activism. Offering financial support when I can.I don't really experience much of this. I see where spaces have been made inaccessible to people with different disabilities than mine.Providing call scripts. Options for things to do that may not be up front.I think I'm just presumed not to have disabilities because of my privilege. Remember it's activismS. Offer more than one way to support an action. Yes
Yes, but without my name
I don't think I've been very helpful. :)
6/27/2018 8:03:1822FemaleWhite
Chronic physical disease/pain, mental illness
I am a female who must navigate a very patriarchal healthcare system
Some days, I am simply to exhausted to share anything with my community; I have taken a huge step back from blogging because I cannot type well anymore due to rheumatoid arthritis activity in my left wrist; I often want to attend marches/protests but am either too sick to go or know full well I will be unable to stand/walk long distances; I feel stigmatized and judged as a young person when using mobility aids such as a walker, cane, crutches, etc.Rheumatoid arthritis awareness and education; inflammatory bowel disease awareness and education; Addison’s disease awareness and education; chronic migraine awareness and education; major depressive disorder/generalized anxiety disorder/PTSD advocate, sufferer, and speaker sharing my personal connection to mental illnessMarches/protests for improved healthcare in the U.S... I feel I am expected and need to be there to advocate for myself and community, but my very disease is the cause for my lack of mobility, endurance, etc. which prevents me from participating; I do not own a wheelchair at this time I have attended many U.S. conferences and there is almost always a “wellness” or “quiet” room for patients to escape to when things become overwhelming or exhausting; I have also been encouraged by many conference planners/staff to attend ONLY what I can and to rest, ask for help, etc. as neededUnsure what this question is asking....I don’t understandPromote the wellness of the patient activists who are the CORNERSTONE of your conferences and the work that you do. Get to know them as people, not just as patients.YesYes, with my nameYes
Kenzie L (@bethecactuskenz)
Would appreciate you running things by me, if possible! (removed for privacy; contact info)
(removed per request)
6/27/2018 10:28:0332FemaleWhite
Juvenile Idiopathic Arthritis, Crohns Disease, Iritis, Ostopenia, High Blood Pressure, ileostomy
They can make it more difficult as flares can limit my work. As they are so unpredictable I may have something planned that I then cannot attend or do. Fatigue is awful and always limits how much I can doBlogging, I work with companies, research projects, offering online and face to face support for other people who are struggling with chronic illnessLocation (being too far away), pressure to make a commitment you know you might have to cancel. Not being advertised well so people don't know about themMade them closer, providing accomodation so you can take rest time, holding more regular but shorter events, phone and email connectionsTry and make them in a variety of areas, encourage lots of communication between everyoneYesYes, with my nameYes
Natalie 'The Spoonie Mummy' (
6/27/2018 12:55:1120genderqueermultiracial
multiple chronic mental illnesses + a physical disability
i'm homeless, poor, and queer
a lot of activism near me (usually on-campus, since i'm a student) isn't physically accessible to me; and most activists in my area completely ignore disabled people and ableism in their own organizations and in the issues they fight foranything i can be, although i'm most passionate about disability justice and queer activism; i participate in voter registration & "get out the vote" activism every year before electionsmost of the public, protest-ish actions near me are in the form of marches, which are good, but not accessible to me as i often don't have the energy to stand + walk for that long and loud crowds can trigger my anxietyvoter registration things are often more accessible, as they don't involve as much yelling and walkingi don't have a car or the money to take public transit to actions that aren't within walking distance, which really limits what i can do to on-campus activism check the ableism within your organization, and make sure disabled people are a part of leading, planning, and organizing your spaces and activities - otherwise it will inevitably be both inaccessible and actively hostile to disabled people. Yes
Yes, but without my name
7/4/2018 17:28:3034FemaleWhite
Neurologic, physical, chronic
Ashkenazi Jew, married to a Wiccan man
I cant sit or stand for long periods of time because of a few conditions so rallies are extremely problematic.Environmentalist, election integrity, poverty, disability acessibilityReligious- activism is work & I dont work on a Saturday Sabbath which has given a lot of backlash. Writing & speaking online has worked well, in person events have only gone well when the "accommodations" had nothing to do with the organizers. I was selective enough to find places to sit & get acceptable food.Yes, religious observance & seat availability means it's rare I can attend anything.Sunday or better yet- Monday through Thursday for events& seating is critical as are maps before the event.YesYes, with my nameYes
Beth Wendy Grundfest-Frigeri
7/5/2018 20:15:5424WomanWhite
Chronic illnesses, physical, cognitive, mental
Possibly queer, although I’m not sure how I identify
I’m usually exhausted and in pain and therefore not able to physically attend much. I also can’t drive and don’t live near much transit at this time. I can’t walk far and have to be careful of what weather conditions I’m out in (especially heat). I also have a lot of anxiety about many things that involve social interaction and depression, both of which make activism very stressful and sometimes bad for my mental health. Disability rights, women’s rights, anti-racism, LGBTQ+ rights I’ve noticed a lot of physical inaccessibility at marches that would make it pretty impossible for mobility device users to participate. At the time I was able to, but it was difficult. There have been times when either my mental health or inability to travel prevented me from physically participating and I wished there was a way to participate digitally. I’ve never been accommodated for such things. I’ve seen a lot of criticism against people who don’t “show up” to marches, protests, etc. despite the fact that many of us are disabled and can’t. Sometimes all I can do is try to spread awareness and participate in activism online or by talking to those I know in real life. I’m not afraid to have conversations with people I know about these important subjects despite the fact that sometimes it’s uncomfortable, and I think some of that is because I know I can’t participate in activism the way a lot of people can. I’ve gone to a few protests and marches where the marginalized group that was the focus was one I wasn’t a part of where I don’t think I would have felt right bringing up the fact that the activity was inaccessible. I wouldn’t want to make it about me when the focus was meant to be on another group. I absolutely think they should have been accessible, but I wouldn’t know how to go about trying to help make them so in the right way. If you’re activism isn’t accessible it’s useless. I can guarantee you that no matter who you’re advocating for someone in that group is disabled.Yes
Yes, but without my name
7/6/2018 6:21:3637FemaleWhiteChronic physicalBisexualChronic pain, frequent injuries, impact mobility and enduranceDisability, political, feministI can't often do long days of standing (or walking and standing) and don't have mobility aids. No overt disapproval - lots of looks for sitting or leaving early. online activism is easiest, but not as impacted in some ways. No one has made protests easier. I have the ability to leverage my job and position to get people to listen of I want to, especially online. In person, I often blend in with the dominant demographic. be aware that people will need breaks or assistance. Have somewhere for people to sit. Have aids to help those with mobility needs or visual impairment. Be service animal friendly. Yes
Yes, but without my name
7/13/2018 13:16:3236WomanCaucasian Mental
Well, I have been living 30% under the poverty level since 2014
I can’t do public spaces, or social eventsPolitics, disability rights, mental illness acceptance, autism acceptance Just not able to participate in social events like marches or town halls, unable to make phone calls, and yeah, ppl criticize me (not specifically me, but generally criticize) for not attending public events or calling.Emailing, postcards, letters, social media posts, and sharing disability self advocate posts. I’m confused by this questionHave a space for letter writing, or ability to participate in some way without attending, for those of us who can’t handle public spaces. Yes
Yes, but without my name
7/13/2018 13:17:5534Cis womxnWhite
ME/CFS, fibromyalgia, POTS, interstitial cystitis, gastroparesis, EDS, PTSD, OCD, autism, MCAS
QueerMy activism has largely been relegated to online & other forms I can do from home/bed, since the worsening of my conditions. Decolonialism, disability justice, Indigenous rights, anarchism, feminism, queer justice, anti-racism, trans-inclusion, etcExperiencing lateral violence within marginalized communities. Organizing meetings held in inaccessible spaces. Abusers allowed to remain in significant roles within the community. Demeaning of disabled activism for not being direct enuf or “active” enuf. Not feeling physically or emotionally/mentally safe in certain activist spaces. Seeing a gap where something was needed & just doing it myself. Using my voice - writing & doing interviews from home to advocate & explain issues. Having “buddies” with me at events who understand my symptoms & accessibility needs. Yes!! Being queer & Disabled has shown the ableism in the queer community. At the same time I think I am treated better than what many disabled BIPOC go thru bc I am white. Overvaluing my white & cis voice, undervaluing my Disabled & queer voice. Accessibility info of all kinds is so appreciated to me on flyers or websites so I don’t need to other myself by asking. Manifestos & explicit statements on how different forms of oppression are actively combated, policies on dealing with abusers etc, makes me feel more safe. Yes
Yes, but without my name
7/13/2018 13:39:5623
Trigender androgyne (non binary)
-Chronic depression which reduces my levels of emotional and cognitive energy;
-Autism which lowers my threshold for external stimuli (so prone to burn out in this society), makes me socially disabled, and makes me hyper-empathetic;
-Derealisation and depersonalisation disorder (DRDPD) which mainly gives me memory issues;
-Dyscalculia (linked to autism)
-Audio Processing Disorder (linked to autism) which means I need CC on everything I watch or I risk not understanding 5 to 30% of it
-Light prosopagnosia (difficulty recognising faces) (linked to autism) which means that for ex I often will need a pause in the middle of a film to clarify who's who, and for that reason CC with one colour per character is extremely useful -albeit never available
Like a lot of autistic folks, I'm both on the asexual spectrum and transgender non binary
I rarely have the emotional energy to go to protests, and I need trigger warnings on everything so I can't just watch a documentary, or read an article without knowing exactly what is being discussed prior to watching/reading

My cognitive impairments also make it difficult for me to read, write and watch new things
Disability rights, trans rights and queer rightsOnline activism tends to be a lot more accessible in my experience Queer spaces are often hypersexualised --so disregarding aces and survivors of sexual violence--, and very party-oriented so wildly inaccessible to a lot of autistic peopleTrigger warn everything. Please. It makes a difference.YesYes, with my nameYes@LouTheTVampire
7/13/2018 13:54:1017Female
Mixed race, identifies as black
Chronic illness, PTSD, depression, anxiety, OCD tendencies, fibromyalgia, etc
I’m a bisexual, black woman living in a white-washed area of Canada.
Can’t access rallies, marchs, pride parades without struggle, wheelchair accessibility is not always specified beforehand, many sit-in’s/lie-in’s aren’t physically feasible for me, heat intolerance ruins outdoor activism, chronic fatigue makes it hard even with mobility aids to actively participate when I am able to. Gay rights, civil rights, accessibility, black lives matter, indigenous affairs, abolishment movement, police brutality, inflated incarceration, mental health discrimination- I do a lot, because I care too much. Many kids my age volunteer, and while I do volunteer in activist spaces, not being able to do my assigned part due to wheelchair inaccessibility, or not taking into account that lobbying door to door may be the most generalized form of politics, but not the most accessible. Hurts when online activism doesn’t count for much. I have had good experiences with my public library organizing activism that is always concerned about how I feel/making me as a marginalized youth feel included and safe. Designated break times, wheelchair ramps, elevators, and indoor activism have all made a world of a difference. I would love if all accessibility information would be clearly stated on the website, without need for follow-up inquiries. Yes
Yes, but without my name
7/13/2018 14:42:5421FemaleWhite
Epilepsy, migraines, IGA deficiency (digestive and infections), chronic joint problems, neuropathy etc etc etc
BisexualI have not been able to drive until this summer, so I haven't been able to go anywhere. Once I get to places, I can't necessarily stand for a long time, because my joints start hurting and the neuropathy starts bothering meDisability and LGBTQ+ and school/childrenI don't go to many activist events due to lack of being able to go. I tend to keep my activism online at this point. I feel pressured into doing the ones for the schools (education major), but I can't go to them, but I do support them. Online activism. I can do it from home. I don't have to do it if I can't. I can just ignore or block people if they become too much. I can spread the word still. I mean, as a female in a doctor's office... They don't believe us as much. I mean, that's in a lot of places. Also, being young. "you're too young to be in pain, you can still do it!" So I am forced to take stairs and so on. Make sure there are ways for people who can't take stairs to get there. Make sure there is a interpreter. Make sure there is enough water. YesYes, with my nameYesBecky Ballard
7/15/2018 19:07:1021NonminaryCaucasian
chronic, physical, mental
middle class privilegeIt’s really a complicated weighing of pros and cons and possibilities if I want to ever go to marches or events, because I can’t just go and be done with it. I have to factor in whether I can stand for long enough, what I’d have to bring, what I would do if I don’t feel well enough to go the day of, etc. I can rarely take on active or leadership roles even though I want to, because I can’t know that I’ll be reliable.Environment, science, women’s rights, immigration, religious freedom, educationThere’s not much thought put into accessibility for mobility devices, or some people needing pacing or optional breaks. Sometimes events have been inaccessible enough physically that I haven’t been able to go at all.Online activism, and well organized events in cities and parks. Choosing to do an event where there’s already a built-in minimum standard for accessibility with flat ground, occasional benches, places to duck out, etc. helps a lot. I definitely have more opportunity and tools being a middle class citizen than others I know with less income. Please please think about the people who can’t go for hours on end without breaks. Make sure there are places to sit, or ways to leave without massive hassle.YesYes, with my nameYesKatherine
7/15/2018 19:23:4936genderqueer white
chronic illness, physical disability, developmental disability, mental illness
fat, queer, ruralmost things are far too physical, a lot of stuff is in the summer when it’s too hot for me to be outside, social anxiety stops me from phone calls, i can only be out of bed for a few hours per day, but the city is [removed per request] away. i cannot risk arrest due to my health concerns. i would likely die disability, queer rights, healthcare, reproductive rights, women’s rights, antifa, antirai can’t afford a wheelchair, so i can’t even really enter most of these events. they don’t take place near enough to parking areas, they’re often in the summer when i can’t even be outside. i can’t be near smoke without getting a migraine or loud noise for extended periods of time without having a meltdown. The barriers to entry into activist spaces seems insurmountable. All i’ve done is emailing and signing petitions since i’ve become disabledi’m fat and a lot of spaces just don’t accommodate my body. Being autistic and around loud people is torture.
Yes, with specifics removed
Yes, but without my name
7/15/2018 19:48:4920nonbinarywhite
Chronic physical disability, long term mental illness, autistic
I’m panro ace and Jewish
I’m not able to go to some things due to them being mainly walking/standing. I can’t walk or stand long term even with a cane or crutches. They also don’t have places to sit and rest and get away from noise if I’m having sensory overload. Disability, gender equality, lgbtq rights, racial issues Sometimes I get criticized for not going to things due to not being able to walk that far, such as not going to the women’s march in nyc or even pride. Those types of places aren’t accessible due to large crowds and long term standing/walking I like doing things that involve less walking and more sitting. Or if frequent breaks are involved with the walking. Sit in protests are helpful. Making sure there is no judgement if you need to step away due to being overwhelmed is good. Yes I’m not able to go to a lot of LGBT events due to them being inaccessible. On the other hand I’m white which makes it easier for me to access medical care in some cases. Other cases because I’m afab and “look like a woman” I’m denied medical care. It’s a double edged sword. Try and make it accessible to people with mobility difficulties. Less walking, places to sit, flat ground for those who use wheelchairs, make sure buildings are accessible. Make things sensory friendly if possible. Provide sign language interpreters and captioning if applicable. Yes
Yes, but without my name
(removed per request)
7/15/2018 20:28:2838FemaleWhite Latina
Mental, Physical, Chronic, Pain
Straight, Married, Christian (ELCA), Family Estranged, Upper Middle Class Support System
Strongly. I'm mostly housebound, live in a small town and have no drivers license so any plans that can't be done at home need significant logistical planning. I've found the few events I've tried to attend had little to no advance plan for parking, and even when a plan was available it often left off crucial accessibility details like staircases or distances (if the parking is on the opposite side of a large building I really need to know that).

Any kind of marching where I'm expected to move a significant distance is simply out of the question unfortunately. Some events have special disabled protest areas, but I would prefer planners just give me a support task that's in my wheelhouse. Rather than being a sad, not-quite-a-marcher, I could be a great graphic designer, or editor, or even spreadsheet keeper.
Feminist, Chronic Pain, Pro-Immigration, Systemic Racism, Veterans IssuesI have a hard time finding events that will plug those of us who can't do the "thing" normally into a needed support structure. I can write the application for the permit or design the giant pins or keep a spreadsheet of registered leaders or any number of things. All it needs to be is something I could do whenever I'm up, preferably from home.

But often organizers don't want to put me in those rolls because they feel I'm unreliable when I said don't know if I'll be able to show up on the day. It seems obvious to assign me something that can be done at any point during a certain week - but somehow that seems to be viewed as a "promotion" and if I can't even do the "lower-level thing" then why would they trust me with the more important stuff?

I've gotten more condescending lectures from activist organizers than you can imagine. Even really, awesome, great people who are generally incredibly inclusive suddenly know better than I do what I'm capable of when it comes to activism. I'm not going to lie, it's weird and a little upsetting.
The very best is when the things that are needed are listed early and online, and I can check off all the things I'm able to do. When it works like that, I don't have to have a weird job interview with a 20 year old Sorority Girl who then tells me only the tasks she thinks are "good for me". I grew up in a very wealthy household, and I've always kept at least one upper class power woman outfit, even when I was living in my car. That outfit plus the knowledge of the social norms of the upper class have frequently helped me break down barriers I don't think other people would have been able to get past. Making upper class white women feel like you are "one of us" seems, sadly, to be one of the most powerful skills one can possess in the activism community.

Also I have I noticed that since my disability declined to the point where I need a visible Mobility Aid, things have gotten a lot easier. We need to do a lot better at understanding that a person who went out without a walker or cane might need to sit down in a chair MORE than a person who brought their own rollator.

Being a straight married person has also helped a lot. Not only does it mean that I usually have a dedicated helper who can help me get past physical barriers, but my husband is not above unlocking the door with his passing-for-able maleness and then handing over the megaphone, and sometimes just the ring is enough for people to assume that I'm the kind of disabled that is inspiring instead of pathetic. I'm not a fan of either, but inspiring at least usually gets you in the door.
I want to make sure that they know the same thing my husband tells his management students, disabled people almost always know better than you what they can do. By all means, describe the task accurately, but keep your mind open to the fact that we may know simple solutions the things you think are insurmountable. anyone has been disabled for more than a couple of months has a PHD in accessibility engineering - consider them the expert on what they can do - and don't turn valuable help away. YesYes, with my nameYesJeanne Tanksley
7/15/2018 21:59:4622FemaleAsian AmericanPhysicalBisexual, middle classI can't participate in any kind of marches, so most of my activism involves advocating to people I meet in the course of my day or digital activismWomen's rights, LGBT rights, Disability accessThere's a lot of hostility towards people who don't physically show up to marches, an attitude that laziness or disinterest is all that keeps people away from an activist cause. Groups that devalue small acts of resistance basically miss out on the entire disabled community's ability to advocate. I lived in a very white, liberal town and I had people constantly making rude remarks about people who wouldn't show up to a protest. It was really hurtful in the wake of the Trump election because I was very invested in anti-Trump protests (as the child of immigrants) and the activist community there was all about sit-ins and marches that were completely inaccessible.Causes that offer multiple ways to support them, including writing emails/signing petitions or other things I can do even on bed-ridden days are so much more welcoming and I feel more comfortable supporting groups that have accessible activism. Things with a script are even better because then I know I'm doing things right and I'm working in solidarity with other people doing the same thing.There's a lack of understanding that my multiple identities make me less safe during protests that clash with authorities (being a brown, queer, disabled woman is always a risk in the US). I'm also inherently wary of groups that have exclusively male, white leadership because they tend to be single focus (for example, fighting for gay rights but being racist towards immigrants, or fighting for disability rights but making misogynistic comments).Consider multiple disabilities! I'm physically handicapped, but wheelchair ramps don't help me much because I use a cane and walking extra to get to a ramp is killer for me. Put up information about accessibility so that disabled people can judge ahead of time whether your event is even possible for them to attend. Be flexible if someone offers constructive criticism. Demonstrate that you value all contributions, no matter how small.Yes
Yes, but without my name
7/15/2018 22:54:0518Non-binarywhite
I have POTS, sensory overload, chronic pain, chronic migraines, chronic fatigue, and endometriosis
I have been judged based on my mental health. I have depression, and anxiety. I also have a memory processing disorder and I am not nuerotypical
yesLGBTQ+, Disability, and Mental Health awarnessmarches not being wheelchair accessible for me, and my deaf friends not being able to access interpretersHaving friends and family with me, to help me get around safely has been super helpful, but I haven't seen the organizers fix anything over the past few years when asked to do so.yeseven you think that your have "covered your bases" for making a space accessible, there is always more work that can be done.Yes
Yes, but without my name
(removed per request)
7/15/2018 22:57:0447female
chronic illnesses (immune disorder from birth that affects me physically and cognitively), depression/anxiety
Jewish, bisexualI don't always have the energy to march (or may in be in too much pain/joint discomfort to do so), and crowds can be painful to be around (noise levels, sensory overload, perfumes/smoke). I can't ever assume that activist spaces are going to be safe for me.disability rights, immigration rights, queer rights, education issues, women's rights, Jewish and Muslim rights, First Nations rightsThe timing of events - for example, my teaching union had lots of events/planning meetings over the last year in the early evenings on weekdays; my chronic illness made it impossible to work a full day and then participate in a big social event right afterwards. No energy. Weekends would have meant I'd be more likely to have the physical and mental energy. I have in fact been had judgemental comments from colleagues for not going to more events ("we didn't see you...", "aren't you going?", "we really need to represent...")Events where I can sit to participates are at a variety of times, phone calls to government representatives, and online activities. Scripts helped a lot with anxiety in terms of leaving messages, information in an easy-to-read and use format online made it easier on brain-fog days, and setting clear norms of behavior for an event makes me feel safer attending.Occasionally, yes for the former - I can think of one women's/immigrants' rights march in particular in my city post-2016 election where a bunch of masked activists showed up carrying antisemitic signs, and they were allowed to stay in the march (we and others ended up leaving because we did not feel safe), and PTSD made if difficult to be around people who were loud and angry ) Meetings in places with a lot of perfumed products are an issue as well - I need to know ahead of time so I can wear a mask, etc.

And yes, for the latter as well. Because my disabilities are not always visible, a lot of assumptions get made about me and what I can do. I don't get asked if I need accommodations unless I specify. For example, my school district sent me to a state-wide education and activism conference earlier this year. Getting to the hotel, I walked into the lobby to check in, and the clerk gave me directions (at night) that included a very long walk across the the grounds and a truly massive flight of stairs. Halfway up the steps, I couldn't move anymore with my luggage (bad joint-pain/vertigo day and a migraine from the flight), burst into tears, and a kind passerby offered to get my bags to the elevator at the base of the building for me. Only getting ready to leave on the last day did I find out that they had someone who could have driven me in a cart and helped me, and that was only because I called to inquire.
Include accessibility info in advertising (including if the space is scent-free) - making us find and examine floor plans, etc. is asking us to do a LOT of extra work just to be able to participate, and when planning, ASK US. Also, have chairs and seating available in case someone might need it. A lot of scifi/fantasy cons have figured this out - quiet rooms for people with sensory issues, seating for those who can't stand for long periods, etc. Activist events could easily do the same!Yes
Yes, but without my name
(removed per request)
7/15/2018 23:55:1330MaleIndo
Autism, depression
White passing, unemployment, middle class
I only have very limited amount of energy that I can put into my activism, meaning I have to chose for which causes I come out of the house for and which I stay in. This makes me feel bad as I would prefer not to have to prioritise various causes.

Before my depression (5 years ago) I was able to organise community events and to lead meetings and workshop, now I’m dependent on what others organise.

Because I don’t have any money I cannot support others financially. Next to this, I cannot attend event, parties, conferences etc unless I qualify for funding. However, due to my depression I hardly ever make it to apply for funding due to anxiety, fatigue, and lack of motivation, isolating me more and more from my (activist) communities.
Trans health care, trans and intersex human rights, lgbti, anti-racism, disability, prison–industrial complex, antifa Entry fees, stairs, inaccessible toilets, language barriers, classism, ageism.
No pressure or criticism lately, before pressure to call people out which is really difficult for me.
No entry fees and/or donation box without someone checking that you’d pay, organise in accessible spaces, quiet rooms, buddy for new people to show you around, multi-lingual, translations, open spaces to self-organise, travel funds Yes, in complex ways Be flexible and open to last minute changes if that needed by people with accessibility needs. Actively reflect on who might not be able to come and for what reasons, can you do anything to elevate some hurdles?YesYes, with my nameYesMax (Sweden)
I included my country of residence for context.
7/16/2018 0:26:4620
aroacei often find it difficult to engage with most posts/articles--it takes a lot of effort to be able to parse and understand things that aren't written either with a lot of paragraph breaks or written more like a bulleted list. it also means it takes more effort to reply to questions people ask-i'll often end up writing a long response that answers a question adjacent to the one actually askedqueer rights, disability rightsmost of what i'm doing now is online so it's really just the things mentioned above: things like posts i can't read because it just takes too much energy for me to actually get to the endagain, posts that are formatted so that it's a series of short things rather than one really long thing. an irl queer group i go to is really great with accessibility, they make sure to let people know that they can leave/come back if a topic is making them uncomfortable/triggered and there's literally 0 pressure to engage in an activity if you don't want toYesYes, with my nameYesrae
7/16/2018 1:12:5119
Female-ish (afab, but still figuring it out)
White and Sami (native north Scandinavian)
I'm deaf, have an unspecified IBD, POTS, CFS, and some other symptoms of something we don't know what is.
LGBT My POTS and CFS mean that I'm exhausted and that I need to be around someone who understands my conditions, usually my boyfriend, which sometimes bars access to feminism and LGBT+ areas. Also I sometimes need a wheelchair, so I'm not comfortable going to protests with it. Feminism, LGBT+, BLM, general anti-racism and anti-fascist, workers rights. I've been called "lazy" and "a bad activist" because I can't always show up to protests or sit ins, also a lot of meetings get held not on the ground floor, and even without my chair, I can't walk stairs, so a lift is necessary, but I've gotten pushback for asking for accessibility, so I've stopped asking Anything where I can help from the sidelines, if I can provide emotional support over an im, I can do something, but I don't have to leave the house on bad days. I can't say they haveTalk to people who are disabled, we often know what we need, just talk to us. But specifically, get able-bodied activists to understand that we are here, and our needs are different. Also a lift and good lighting
Yes, with specifics removed
Yes, but without my name
(removed per request)
7/18/2018 7:40:2820
cis female, some (signifcant) degree of discomfort with Feminity, but idk how gnc I actually present
white (central European)
asd, chronic illnesses (circulatory disorder + fibro), recurrent migraines, mental illnesses (anxiety, ptsd, depression, ???)
Really hard time with loud or crowded environments. I wanted to join a Palestine support situation, but group environments are not tenable, so I took a button. This was good, suprisingly few people have those, and some people talked to me about them. But. Limited ability to communicate both vocally and in typing (chronic hand pain). limited mobility means i Really can't do anything that involves a lot of standing or walking. It's distressing that these barriers read to people as a lack of interest. Very few places give information about disability access on webpages, or tell me if there's seating, or quiet spaces, the websites' designs are incredibly hard to process & navigate. Facebook and other social media platforms are overwhelming to me and I can't use them for groupchats & meet-ups and such. LGBT rights, mostly. I'd like to get involved in disability stuff, too, but that's harder still to find where I live. I would like to do more.The expectation to constantly be On & Informed? I get that that withdrawal is a choice I have a privilege to make, but I think it's a necessary one? Not joining social media is not something people understand well, so I end up trying and failing, which is demoralizing. I feel really guilty about not going to protests. Everything has stairs? The button thing worked! It was a difficult thing to do, too, because it's hard to speak to people, but I figured that would make it meaningful. Sort of..stuff that reads as lip-servicy is doable? I don't know, I'm used to a degree of isolation when it comes to ableism.
It helps to have people who Help?
Well, yes. I have a really specific form of activism that is Mine and that is Personal, because all that large-scale stuff is a little impossible.Yes
Yes, but without my name
7/21/2018 5:00:2926MaleCaucasian
PoTS, Dysautonomia, hyperhydrosis, Gut involvement - all chronic, result in sensory sensitivity
Shy/Introverted, unwilling to approach strangers or ask for help from people I am not close to
I am unable to travel far, stand still, be upright for long, and further unable cope with loud noises and bright lights some of the time. My energy for a day is very limited before my symptoms for that and several further days worsen. I live [removed per request], and rallies are in cities, typically, I thus cannot attend most.

In addition, limited amount of time able to focus on tasks etc makes online activism harder. My perception of temperature varies wildly, and can cause shivering etc. Various other issues with autonomic function lead to nervous twitches, slurred speech, sweating, shakes, nausea and more.
Human rights, civil liberties, free speech, ecology, furtherment of democracy, educationI have not received pressure, but most activism is not open to me due to travel and symptom issues. Even meeting my [removed per request] group is prohibitive in duration and overstimulation, though they allow me to step out, and help if I look bad etc.NoneNarrow steep stairs access to a venue made access with a crutch and now sense of ballance very difficultPlease find new ways of pressuring politicians and business leaders less dependent on face to face interaction with them or the public, and create platforms for suggestions to solve problems as well as pointing them out, but if you can't, keep uo the good work!
Yes, with specifics removed
Yes, but without my name
7/25/2018 6:02:4824non-binary latine
Mental illnesses, chronic pain
lesbianHave a hard time marching, getting around at eventsCivil rightsMy wheelchair isn't ideal for autonomous movement on most surfaces, especially uneven ground, people stateParticipating in reading groups, making phone calls, making foodYes, as someone often read as a woman I am often delegated "womanly tasks" and my voice is often not heardIf you want your space to be accessible, hire a couple people withdifferent disabilities to doublecheck your work. You probably missed something. Yes
Yes, but without my name
7/30/2018 6:52:0041agenderwhite
chronic, degenerative physical disability, mental illness, hearing difficulties
QueerI cannot participate in marches due to the fact that I can't stand for more than 5-15 minutes, much less walk 3 miles! Also, I don't drive, so getting out to do "RL" activism is very, very difficult for me. I can take the bus, but only for a short amount of time. Your basic SJWThe fact that people always *march* and I cannot do that. All I can do is just sign petitions and spread the word. I'm hard of hearing, so I can't even call my representatives and I only get canned responses if I email them.noPlease, please do something besides marches. I
Yes, with specifics removed
Yes, but without my name