Disability Justice and Self-Advocacy

(Notes for the Disability Justice Panel at the Third Annual Gender and Sexuality Alliance Forum for high school youth, held at Glendon College on May 14, 2016)

The need for disability justice

Our society treats disabled folks like trash, as if we are disposable. (That, sadly, is not a hyperbole.) It doesn’t judge us worthy of — and doesn’t empower its systems to give us — the resources to function, sometimes as even most basic levels, never mind being able to earn a living, or thriving. If we are supported by disability income, we are denied the resources to pay for all our medications, appropriate nutrition and health care, often attendant services, reliable transportation. We are not given support to work (instead, abled people are routinely hired over us, even when our qualifications and skills are equal or better), are not trained for jobs we would like to engage in, or even, often, encouraged to reach for that work. Society excludes us, and minimises our worth and contributions at every turn.

So we need to be wily and clever, and access the combined brain power and strength of our communities, in order to thrive. The fact that our society has pretty much given up on us is why wheelchair access, ASL interpretation, attendant services, scent-free environments, and other disability needs are not made a priority. Most organisations, including government ones, prioritise subsidising folks’ parking better than they do funding for accessibility! Imagine if it were the other way around.

Some ideas, then, on creating and pursuing disability justice:

1. We can share with other disabled folks — our knowledge, resources, strength, system hacks, access to community, access to power and amplification of our voices wherever we find it. So, e.g., those of us who have negotiated various systems and figured out how to best get our needs met through them, can share that information and skills with others, so that they don’t have to reinvent the wheel. And those of us who have gained access to power of whatever kind (being part of a student government, for example, having influential parents or friends, being well-known activists, etc.) can help those whose needs are being ignored and passed over in the system.

2. In fact, I’ve found that being part of advocacy and information-sharing groups — and passing on our knowledge and help to other disabled folks — is the best way of subverting the ‘society doesn’t prioritise our lives’ problem. We don’t need their approval to live and meet our needs. But we will find ways to take their money — that’s where sharing with each other about available services and resources and grants and funding and how to hack it, comes in. (There are a tremendous amount of various grants, scholarships, and other funding opportunities out there. They are often inadequate on their own, and all available through different organisations and government bodies, and often have many hoops to jump through, but that’s where information sharing from folks who’ve navigated those money systems comes in.)

3. We can choose to value ourselves as we are, instead of waiting for society to approve of us. We don’t have to be ‘fixed’ (whether physically, emotionally, or mentally) in order to be and feel valuable. But we often can’t do that (i.e., grow our self-esteem, prioritise our needs, develop a strong sense of self, push back against shaming, neglect and devaluing, etc.) in a vacuum. Humans are social animals, and we often need to have our worth and value reflected to us by others before we can internalise it. Peer support from other disabled folks, especially folks with disabilities like ours, can really help with this. If you’re having trouble finding such support in person, it’s almost definitely available online! (Through tumblr, facebook groups, forums, etc.) Also, witnessing bodies like ours, and people like us, doing things we want to, is pretty necessary to be able to value ourselves and pursue our own life goals. Since society reflects back to us that we are ugly, disgusting, weird, not-worthwhile, we need other reflections. So I suggest regularly seeking out photographs (if you are sighted) and articles and blog posts showing and describing other disabled folks loving themselves and living their lives as they please. These will help so much.

4. We can help advocate for others: sign and promote petitions, fundraisers, repost articles about issues hardly anyone in the mainstream talks about (like, how often airlines break wheelchairs), boycott ableist places (including ones that refuse to give us access information, or that have humiliated or mistreated disabled folks), go to demonstrations. We can’t do this alone, so we have to be there for each other. This doesn’t mean wearing ourselves out past our spoon limits, it means including at least a little advocacy for others in our spoon plans.

5. Disabled people make our own culture. If we waited for the mainstream to include us, we’d pretty much never see ourselves, our concerns, our lives, represented. Instead we write our own poems and essays, sculpt, paint, act, make films. As part of practicing disability justice we can go to other disabled folks’ shows and talks, and get crip culture exposure which will nourish us — and we can promote those to abled people we know — and support them that way. And we can be part of making that crip culture. If you like writing, speaking, performing, making visual or tactile art — crip culture could benefit from things you have to communicate. Consider getting involved.

6. We can also support disabled folks’ income by getting our services from them. (E.g., sewing and alteration services, writing classes, editing services, alternative health care, therapy, even herbs and produce.) When paying for any of those, we can try to support folks in our communities. I personally prioritise giving my money to either disabled folks or immigrants or folks of colour whenever I can. We already know that society doesn’t prioritise supporting our communities.

7. We can also prioritise accessible spaces. Let’s consider whether the event we’re considering attending is in a wheelchair-accessible and/or scent-free space, and whether ASL is provided, when deciding whether to go. And as much as possible, let’s never organise or co-organise events in inaccessible spaces, even if we personally can attend, because that’ll mean that members of our community, folks who have our backs, can’t walk through the door. Considering accessibility can start to be one of the indices by which we measure whether we want to attend an event.

8. We can work to change society by acting as if our lives are meaningful and worthwhile and as if we are worth human rights, an adequate income, accessibility, etc. Those actions can include education about disability and ableism, human rights challenges, talking about our sex lives in public, making porn that features our disabled bodies, asking for access at all events, being ourselves in the world that tries to crush us, being out there/visible, showing our self-esteem and our amazingness, posting pictures of, or writings about, us living our lives in their fullness. (Studies say that prejudice changes the most when people get to know someone they’ve been prejudiced against. So when we provide portraits of our lives as three-dimensional people, it can help change the prejudice against us.)

9. I’d say the final piece of disability justice activism is cross-activism, or intersectionality. Let’s show up for folks from other marginalised groups whenever possible — for demonstrations, practical support like bringing food, providing child care, giving donations, sharing news or articles with others in our lives on issues affecting those groups, boycotting places that have injured marginalised groups. No one oppressed group can’t do everything alone. So we help each other, and get help in turn.   That’s community justice.

Self-advocacy

Now that we’ve covered that our lives are worthwhile — and that we can’t wait for the mainstream to catch up to that idea, but have to live our lives on our own terms, and demand our rights — here are some ideas on self-advocacy as a disabled person:

1. It’s pretty important to know what our legal rights are. This really strengthens our ability to advocate for ourselves. Legal clinics are pretty great places to find out our rights — but I’ve also had good results from doing online research myself, and making sure I’m looking at primary sources, not someone else’s commentary on the law. (I personally have the full text of the Residential Tenancies Act bookmarked on my browser, as well as some of Toronto’s bylaws.) Knowing what your rights are is an excellent first step to advocating for yourself in situations where the law (as opposed to someone’s discretionary powers) matters.
2. It takes persistence and clarity to advocate for ourselves. We need to know exactly what we want as an end result, and focus on that goal when advocating. We need to not get distracted by people’s insults or red herring issues. E.g. my landlords painted without warning me, and it made me wake up suffocating, and then be ill for days. What do I want or need? Maybe I want an apology, but I probably won’t get one, and if I do, it’ll be insincere, so — moving on. What I really need is a plan for it to not happen again. I start with communicating that need to the landlord. They might come back with: But we didn’t know! And I might say: Well, now that you do, let’s make a plan for giving me prior notice and figuring out painting dates for times I can be away. And they might say: It’s inconvenient! And I won’t argue, just say: Nonetheless, the law requires that accommodation be made for my disability, and what I need is… The broken record often eventually works. That’s where the persistence comes in.

3. Corollary: We need to recognise when we’re worn out, and need help. When we recognise it, we can ask folks to advocate for us, ask for company and witnessing at difficult appointments or meetings, ask for hand-holding when we write letters/emails/make phone calls, or help scripting the letters/emails/phone calls. There is no shame in acknowledging that we need help. It’s good self-care! A rabbi whose work I like quotes: “We don’t live by ourselves in this world. If you’re in trouble, you go for help.”

4. Using free advocacy services is a good way to get help and decrease our spoon expenditure. I have used a number of them, with varying degrees of success, from “wow, they really helped, and so quickly too!” to “well, this has been dragging on for months, and I have nothing to show for my involvement with these folks” — but over all trying to access them is a good idea. Your school might have advocacy services available. There are also legal clinics, the Human Rights Tribunal (and the legal clinic that helps with the application!), the ombudsman, etc. I haven’t yet tried public pressure via social media, but I have seen that it can do wonders. Also, asking one’s community to get involved in a letter writing campaign on our behalf, or in trending twitter hashtags.

5. It’s a good idea to allocate spoons by priority. That priority could be what we most want, or what is most urgent to deal with.

6. (Because so many people bring their ableist asshole selves to interactions with us) many of us will need to develop excellent skills at boundary-setting. This includes basically:
   a) figuring out what information or acquiescence folks are not entitled to (a lot of stuff, it turns out), and what we don’t want to tell them or concede to them,
   b) communicating that super-succinctly (reasons are not necessary most of the time! They just provide a bone to argue over), and
   c) enforcing them, with consequences. That last part is the hardest and the most important.E.g. My landlords refuse to schedule appointments for various maintenance visits; they just send out or post notices that say, “eh, sometime in this week we’ll be barging into your home.” That’s unacceptable and also against the law. Since for several reasons, including disability ones, that’s not going to work for me, when they did this around the annual fire alarm testing, I wrote them a letter that said: the law states you must set a time; here’s what I suggest; if you don’t write me and agree on a time, then you may not gain access to my home. They showed up when I was sleeping, and had both the deadbolt and the inside lock on. They couldn’t get in. (Consequences!) That’s when I got a letter agreeing to the time I had suggested.

   Another e.g., that most of you will be able to relate to: people ask me rude disability-related questions a lot. When I used a cane or crutches or a wheelchair for a number of years, I’ve been treated to: “what’s wrong with you?”, “how did you hurt your knee?” (my knee wasn’t injured), “what’s your disability/diagnosis?”, “what happened to you?” Now I no longer use mobility aids, but when I ask for access around my chemical sensitivities or food allergies, people really want to (intrusively) chat about it. A LOT. Similar stuff can happen when I need access around my hearing disability or fatigue. (Interestingly, when I wear a chemical mask, everyone just acts like I’m not there. It’s creepy.) In all these cases I say (some variation of) “I’d rather not talk about that”, and if they persist, walk away. (If that is an option.)

   Sadly, people will try to push or ignore our boundaries whenever possible. When that happens, it is really important to enforce our boundaries; otherwise they learn that they can ignore what we need/want.

   I’ve found it very useful to not give reasons, especially when restating a boundary, but just to restate what I want. (e.g. “I don’t want to talk about that” — “Why, what do you have to hide?” — “I said, i don’t want to talk about that.” — “Why are you such a bitch?” — “I still don’t want to talk about that.”)

7. When asking for access to events, we could hemorrhage our spoons trying to make people accountable around accessibility. I’ve come to this resolution: I just ask once for access info — or, if it’s posted but incomplete, ask once for the rest. If no one gets back to me, I pass on that event. How wonderful could it have been if they couldn’t be bothered to genuinely include disabled folks? If it’s something I really really want or need to go to (I might be one of the featured speakers or poets, getting paid, and I need the money), and my access requests are getting ignored, then I keep sending messages, but keep them short. I don’t communicate my anger, just succinctly say what I need over and over. That’s my best shot at both getting what I need + spending the least spoons on it.

8. Bureaucracies are soulless. Their callousness can crush us. It’s a good idea to try to organise support people to take to bureaucratic meetings. And it’s unlikely that we can change a bureaucracy — so I only try to change it when it’s super important + with the knowledge that my effort might not bring any results. It works much better to organise grassroots support or alternatives instead. E.g. when the Ontario government decided to get rid of the special diet for ODSP & OW recipients, people organised a letter writing campaign protesting this huge cut to very poor (and mostly disabled) folks’ income. At which point the government backtracked a little, and kept a skeletal version of the program. The majority of people on it lost much (or in some cases, all) of their special food allowance. So that effort was only marginally successful. In situations like that it can be more useful/at least as useful and less exhausting to see if we can access other supports already in place (e.g. the vegetarian food bank; the top-up that Jewish Family and Child Services gives to some Jewish folks on social assistance; the medical transportation allowance or volunteering-linked transportation money from OW and ODSP), or start a small business to help make up the money, and promote it through our communities.

9. It’s super important to ongoingly access support for ourselves. Community support, loved ones’ support, peer group support. We need it function in this world which wasn’t not made with us in mind — but also/especially to do big things like self-advocacy and other ways of changing the world. If you don’t have enough support right now — you can grow your group. (Or, as Captain Awkward puts it, your Team You.) Put yourself out there as exactly who you are, and you’ll attract similar/like-minded people. Attend events and discussion groups that interest you; hang out in facebook groups pertinent to your interests. They’ll be there. It turns out that it’s a waste of time to pursue (friendship, romantic, peer-support etc.) relationships with people who don’t value and treasure us as we are, with our disabilities and other particularities. There are folks of your species out there! And you’ll find them, especially if you bypass people who don’t get you, don’t approve of you, don’t make space for you, and don’t prioritise access for you — and instead throw yourself into doing things/being in spaces you are passionate about. And those folks will have your back. That’s what will sustain you, in living and in the fight against oppression.

Notes in response to a few audience questions

1. How to throw a fully accessible event: I had a link to share here that covered the basics, including making your event scent-free, but..that web page has been made private since I’d last looked at it.  So here are two less well developed, but still good jumping-off-point lists, from George Brown College: http://www.georgebrown.ca/uploadedFiles/GBCCA/05_Student_Life/Diversity,Equity_and_Human_Rights/checklist-for-accessible-events.pdf, and from Ryerson: http://www.ryerson.ca/content/dam/accessibility/resources/guide_to_accessible_events.pdf.  Those lists talk very little about scent-free or neurodivergent access, so I’m including some notes and links on that below.
   Also, if you’re putting the event together in Toronto, here’s a community list of wheelchair-accessible venues that might be of use: https://docs.google.com/spreadsheet/ccc?key=0AqcHkE2dHEBPdFZSUWNYNE8wUTUtMjUySkMxTi1tY3c&authkey=CL6t9I4G&hl=en#gid=0

   Additionally:

   If at all possible, have physically disabled and emotionally/psychologically disabled and neurodivergent people be part of your accessibility efforts. Disabled folks are a lot more likely to be able to identify access needs specific to your location and type of event, and to spot lacks or mistakes in the planning.

   The guides I linked above don’t specify, but in order to be accessible to wheelchair- and scooter-using folks, you’ll need to make sure your doorways, hallways, and aisles are wide enough.  According to Infrastructure Ontario (this document is a fascinating compendium of many tech specs on access!), all doorways that attendees may need to go through should to be at least 91.5cm (36in) wide, and when doors are open, should have a clearance width of at least 86.5cm (32in).  All aisles between seats should also be 91.5 cm (36in), and passageways that attendees may use should be at least 110cm (43in) wide.  Bring a measuring tape when viewing your potential event spaces!

   Scent-free access includes:

   a) Clearly (and frequently) asking participants to not wear scents. Plus providing them with instructions on how to do that. (Most people don’t consider their, e.g., scented deodorants as fragrances. Or think that if they can’t smell their perfume anymore, it won’t be an issue for a sensitive person.) Here are two how-to links you could include on your event page: http://www.peggymunson.com/mcs/fragrancefree.html / http://www.brownstargirl.org/blog/fragrance-free-femme-of-colour-realness-draft-15
   b) Making sure the space isn’t cleaned with bleach in the previous 24 hours, and hasn’t been painted in the last 2 weeks. (This period may differ depending on the kind of paint used.  Ideally ask an MCS person to check out the space if recent painting is a factor.)
   c) Removing ‘air fresheners’ from all spaces (including washrooms) at least 24 hours in advance.
   d) Replacing the soap in the washrooms with scent-free soap, so that everyone uses unscented soap. (The scented soap can be a problem for chemically injured folks just from smelling it off someone’s freshly washed hands.)

   Access for emotionally disabled/mad/mentally ill and neurodivergent folks includes active listeners, content warnings, and quiet spaces. These are not luxuries; don’t treat them as such.

   ETA: And if you don’t know much about providing access for autistic folks or others with sensory-processing issues, I recommend this clear guide: https://autisticality.com/2016/03/30/how-to-make-your-event-autism-friendly-part-2-sensory-needs/

   Some disabled folks will also need attendant care to be able to be at your event.  Not everyone who needs attendant care has it government-funded, or can afford to pay for it themself (cuz capitalism/our society doesn’t value disabled lives, as discussed) — so providing access to those folks will mean booking and paying for a few PCAs/PSWs (personal care attendants; also known as personal support workers) to be available at your event to anyone who needs help going to the washroom, eating, changing clothes, etc.

   Access also includes: providing child care, making sure economically disadvantaged folks can access the event, having clear no-harassment and consent policies (and clear plans for enforcement of such), and making sure that trans and non-binary people are safe in the space: so, educating your attendees on how to respect trans folks, providing gender-neutral washrooms, not segregating participants by gender, or making them identify their gender unless necessary (and when is it really necessary?). These, while not considered disability issues, also very much affect folks’ access to events and spaces, and must be considered and arranged for if you want to be truly inclusive.  And I guarantee that some of the disabled folks you’ve just worked to include, are also poor and/or trans and/or parents, etc., and will also need these kinds of access.  Which means without these your event is not fully accessible.

2. How to advocate for your accessibility needs in public when you have an invisible disability:
   Be clear and unapologetic. Say what you need, don’t explain it, and wait for people to meet your need. A lot of the time just the chutzpah of you asking and acting like you’re entitled to it will get folks to bend to your request.If you give reasons, you sound more like a supplicant, and also give folks a ground on which to argue with you. (“Oh, you don’t look like someone with a heart condition.” “Aren’t you too young to have arthritis?” “I read that fibromyalgia is just all in your head!” Etc.) I just say: “I am disabled and I need ______.”

   It is useful to get other folks to advocate for you. If you need a seat on the bus, asking the driver to arrange it (“I have a disability and need a seat. Could you help make sure I get one?”) generally works quite well. Getting a friend/loved one to ask for your needs also tends to work out a little better than doing it yourself, sadly, because (as Andrew Gurza also addressed during the panel) the moment you identify yourself as disabled, you lose some social status. Folks now respect you less, and see you as less human.

   If self-advocacy in these (and other situations) feels terrifying, and you find that in the moment you get stuck and stay silent — I have had good results from practicing what I want to say over and over out loud at home. Eventually my brain and my tongue get used to me saying it, and when I need to say it, it’s finally there, on the tip of my tongue.

Good luck, and good fortune in changing the world!

Edited March 18, 2017, re: accessible events content.