Thoughts About Disability Discourse – A Thread that Got Too Long For Twitter

An empty table with no chairs around it, spotlighted in an otherwise darkened room.

I want to talk a bit about how disability issues get discussed and addressed but first I want to specify that I am a white disabled woman who became disabled – the reasons why those things matter will hopefully become clear.

I also want to say I write this in support not as substitute – follow, read and hire Deaf and Disabled BIPoC.

So one of the things I noticed fairly early on in moving from non-disabled to disabled person was that I became less and less of a ‘relatable’ person. I became less and less human.  (Relatable meaning – people I dealt with be it in medicine or every day life seeing points of similarity between themselves and me.)

Sidenote – relatable can also be a mixed bag because on one hand it can make them more likely to see your humanity and on the other they can spontaneously blurt out things like “I’d want to die if I was in your situation.”

At first, when my appearance hadn’t changed much – still thin, still full and healthy shiny head of hair, still all my teeth, still wearing fashionable clothes, still had boyfriend, still passed for white middle class (I’d been poor moved to middle class ended up poor again), ‘temporarily sick’ etc.  – it was mainly  “you are too young to be…” “but you were so pretty (😕)and took such good care of yourself…”

I was their worst nightmare and they felt sorry for me. I was aging without passage of time. My skin dried out the way it does in people decades older. My bones lost density and broke easily. When I still could walk I was unsteady. Getting up was difficult. I needed naps. My hair – oh my hair. ☹️

The more my appearance changed and the more my financial status changed, the more the ‘OMG how could this happen to you’ dropped off and shifted.

The shift went from ‘How could this happen to you that’s so unfair’ to ‘Ew what is wrong with her’ and ultimately with poverty it shifted to ‘I would never end up like her.’

And I think some white disabled people might stop right at this point in their thinking of disability – especially if it they were born non-disabled. Depending on wealth and/or family support they may have not lost housing, may still take trips, travel, have vehicle, go to school etc. But can’t get into a concert or a restaurant or use Uber.

Wealth can insulate a white disabled person from a lot. It provides alternative options – for example my wheelchair is still not repaired & one reason why is because I can’t pay for it myself & because I have no other chair to use while it is repaired.

Wealth can put equipment on credit card so not left in bed waiting for approvals. Wealth can buy best equipment, smart drive add-ons, adaptive bikes (super expensive), etc. Wealth can alter the experience of disability a LOT. Wealth can hire help, pick where it lives, buy furniture that works, afford adaptive tech, kitchen gadgets, etc. etc. etc.

If you own a vehicle you are more likely to make accessible parking spaces a priority than accessible transit. Do you ever notice that in all the discussions about employment of disabled people by some disability organizations we never hear transit discussed? Ever wonder why?

It’s not that white, middle-class Deaf and Disabled people don’t face discrimination because they most certainly do. And it’s not that it is not that we shouldn’t address the discrimination they face – it’s that it is the only discrimination we do discuss and address most of the time.

As a disabled white woman living in poverty my experience is one of ableism mixed with sexism and poverty – which is not simple addition, meaning you can’t discuss poverty and sexism and ableism separately and cover it – each is impacted by the other.

For example I now not only have men assuming I am incompetent and require their splainations, I have non-disabled women assuming same of me – or at least non-disabled white women. I also have greater and different expectations of gratitude placed upon me than a disabled man might or a disabled white woman with greater wealth.

So anyway, getting back to becoming disabled as a white person I think it is initially understood, and for many remains, at the level of comparing ourselves to our former lives and our peers and vice versa

And even those who, like me, end up poor, it’s easy to focus on the robbing of status, the barriers we face, our lost ability to be in and use space. And we just want that back – it’s so close yet so far away. Can almost touch it but can’t reach it.

It’s all true and valid to want to change – but it’s also very white. That is we compare our experience to that of white non-disabled people. Our lived experience of discrimination is non-disabled white versus disabled white. It is, at best, a limited experience and a limited perspective.

Class, gender and other things play an important role but in my experience it’s only white disabled people that believe the only barrier between their equity and inclusion is a ramp or whatever.

So we have campaigns and analysis of disability and accessibility that is based on proving how we aren’t that different – or for those who do embrace disability, believing that the white experience of exclusion and barriers = all experience with disability and barriers.

I really want to highlight again – it’s not that these barriers don’t matter and don’t affect all disabled people with similar disabilities, it’s that these are the ONLY barriers that get discussed and that appear to matter in conversations about disability, accessibility and policies about these.

I also don’t think level of public awareness and concept of disability matches the statistical spread of disability and various kinds of privilege may be at play in that as well.

I’ve learned SO MUCH from Disabled BIPoC and non-disabled and Disabled BIWoC especially, so one small way I’ve tried to push back against this is to challenge how we discuss things like access to public space and who gets to define and talk about it.

IMO if a disabled Black or Indigenous person feels at risk of being killed by police as a result of their disability and their race – being Disabled while Black – it is, a barrier to their access of and use of public space, to employment, to life.

When racism, sexism and ableism intertwine in healthcare – it’s hard for me to even imagine how much the risk of harm jumps.

It must be part of disability dialogue and policy frameworks. It must be part of our work. A ramp is not going to fix this. And moreover, it’s not just that the current dialogue around disability and accessibility often sideline or erases completely anything other than white disabled experience, it’s the impact that can have on what solutions people come up with.

If all the barriers are not understood and if the way the different oppression intersects and different prejudices interact are not clear, then you could build accessibility that further marginalizes or causes harm. You could help some at the expense of harm to others. You could build racism into accessibility. I’ve definitely seen sexism built into accessibility and classism built into accessibility.

I don’t assert expertise and lived experience I don’t have so I feel like my role is to point out who is not present, in some cases decline to be present and in some cases actively work to ensure presence. Governments, business and professionals need to be talking to (and by that I mean hiring and paying) Deaf and Disabled BIPoC, particularly those with justice lens.

I was recently offered money to engage with a community I don’t belong to. I turned it down and said that you engage with that community by hiring someone from that community and that is not me.

But here’s an observation I have made: I push on gender, class and other issues – for example I wonder if the acceptable steepness of ramps is based on what is easy for young male manual wheelchair users who have greater upper body strength. I may get an eyeroll reaction when I raise these things but I don’t get hostility.

And yes, please be assured that naming wealth privilege in disability representation in Vancouver, BC Canada does not make one popular or well-liked and does indeed put a target on your back and get you blacklisted but it’s still not same as when I bring up racism.

The moment that I dare to bring racism into the conversation – even as a white disabled woman – the mood changes. Dramatically. I can push hard and be called ‘passionate’ about a lot of things – but if I bring up racism and point out we’re all white and that is a problem, then the EXIT sign is pointed out.  

So that’s one way that I see racism in disability discussion and topics. It’s not just who’s in the room and who is represented but also the definition of terms and the parameters of what is discuss-able and allowed as a disability and accessibility topic.

Accessibility as we currently discuss and define it, is what prevents a white disabled person from being able to live like a non-disabled white person.

There is a something else I think about.

I have said before that I believe pity and hate are flip side of same coin. Pity is indulgence – as in you look down on someone but for whatever reason(s) you decide to pity not hate them.

To be clear, no disabled person wants to be pitied. It is a horrible feeling to be on the receiving end of pity and Fuck Your Pity is a great slogan. But pity is like the smiling face of discrimination. Pity is ‘nice’ – or likes to think of itself that way. To be clear, pity still kills disabled people. It is dangerous.

But because pity is the choice of the person doing the pitying to decide to go with what they believe is ‘better option’ – ‘I won’t be my worst self because I pity you. You are worthy of my pity’ – it can mean patronizing as opposed to stun gun or worse.

People of ‘good character’ pity disabled people. People of ‘poor character’ mock, bully, attack and assault them. That’s the division in the minds of many. It’s not whether they think we should be pitied or not, that’s not even a question – it’s not about us it’s about them.

This is demonstrated by what some of these people get incensed and angry about – like Trump mocking a disabled journalist. That was a line too far for them. How dare racist, misogynist, eugenics-loving Trump make fun of one of the ‘good ones’ while promoting his ableist, racist, misogynist horror show.

Violations of etiquette around disabled people are more clear-cut than violations of our human rights in their minds.  (This also relates to these accounts that for no apparent reason other than demonstrate ‘good team’ tweet reminders to use ‘person first language’ – and I think this is why they get so angry when disabled people push back. They were showing their good character – how dare we not appreciate that. How dare we even have an opinion about that.)

In order for a person of ‘good character’ to not pity someone they need justification not to – in their minds.

Pity is predicated on that person’s belief system and often that means it is dependent on their judgment that you are worthy of their pity, that you don’t ‘deserve’ to be poor and/or disabled and that they think pitying you shows they are good person. 

Pity says that ‘even tho’ you’re a burden, blight, ugly sight, not worth much – it will ‘help’ you.

Why am I talking about pity? Because again, I’ve watched people who pitied me (finding me inspiring without reason means you pity me) move from wanting to help me to coming for me when I challenge them about racism. (Not against me obviously because again I’m white).

And it makes me wonder if some of the experiences I have with being pitied would be turned into being seen as dangerous if I was not white.

I know that in one instance a draft that was enthusiastically approved became a cancelled presentation and the only additions were text descriptors (for accessibility) and slides about racism – so one of those moved the marker from perfect to cancelled and me being labelled as “dangerous.”

I can push hard and be very direct in my critiques about topics white non-disabled people believe relate to accessibility and disability. My “passion” may bother them but most will make allowances for it. But when I say “by the way, it’s more than curb cuts, here’s some stats and you need to bring in Disabled BIPoC , particularly those living in poverty” – the resistance takes on a different tone.

I don’t have a conclusion to this thread other than you should read, follow, hire Deaf and Disabled BIPoC.

I did not submit an application to join the City of Vancouver PWD Committee though I was asked to. I did not think they needed another white disabled person on it, (even if this disabled person is poor not middle class and is actually disabled). I met with a City councilor and I told her my opinions about what should be done.

I don’t know what the final make-up of it turned out like but I can say this – I am no longer interested in excuses that involve ‘We put a call out and no Deaf and Disabled BIPoC applied.’ If that is the case then I suggest you hire someone to do outreach and until then you leave the spaces open and do not fill them and preferably put the entire committee on hold. If no one is answering it is telling you important information and you should pay attention.

One thing I know for sure is we need to stop proceeding until then. Even if it means disbanding a committee and starting over. Even if it means a conference with an empty stage. Until we are inclusive in the disability community we need to stop pretending we are fighting for, or able to speak unhypocritically about, inclusion.

2 thoughts on “Thoughts About Disability Discourse – A Thread that Got Too Long For Twitter

  1. Pingback: Thoughts About Disability Discourse – A Thread that Got Too Long For Twitter | mssinenomineblog | albertruel

  2. Pingback: Accessibility Or Luxury? It’s a Matter of Perspective. | mssinenomineblog

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