The other day I watched a short video featuring the BBC’s Ellis Palmer, YouTuber Lucy Edwards and activist Tanni Grey-Thompson (Lady GT). Don’t let the colourful backdrops, tight edit or light music fool you into thinking you are passively consuming entertainment. It will leave you thinking. At least for me it did.
Several things that were said in this video have lingered; like the stranger who came up and demanded to know how Lady GT got pregnant, (presumably because disabled people don’t have sex in their world view). In my imagination after Lady GT explains it was a result of having sex with her husband, someone wearing white gloves hands her a cup of tea which she raises to her mouth never losing eye contact with the person who asked the invasive question, lest she miss a moment of relishing their downward spiral into shame.
As a wheelchair user I definitely related to Ellis Palmer’s request that people stop telling him he’s speeding in his wheelchair. It’s one of the odder things people say to me when I am wheeling at pace that is equivalent to leisurely walking.
But it was something else Grey-Thompson said that really stuck with me: “It is actually one of the most patronizing things for a disabled person to experience is for some non-disabled person to come and say ‘You’re so inspirational.’ Because if you say ‘why?’ they often don’t have an answer.”
This was not new information for me. These words could have been said by me. In fact they have been. But sometimes things you know and have said and heard others say many times before land on a new wire and it’s like hitting that sweet spot in pinball when the ball bearing just keeps bouncing back and forth, hitting bumpers at exactly the right spot and the machine comes alive with flashing lights and a cacophony of sounds and before you know it you have a free game. Like that. Sort of. With less binging and slower.
Non-disabled people online and ‘in real life’ (online is real life so not best term), will often tell me I’m inspiring. I usually say thank you but rarely succeed at covering completely my ‘barely tolerating you right now but going to be polite because big picture, situation, just want this over fast, whatever the reason’ feeling. If they notice I don’t seem impressed they assume it is a result of low self-esteem and become more obnoxious in their efforts to ‘comfort’ and convince me as I try miserably and resentfully to convey enough gratitude to get me out of that conversation as quickly as possible.
Some people tell me I’m inspiring when they walk by me on the street. Some tell me I’m inspiring when I’m trying to find the best price on coffee at the grocery store. Some people tell me I’m inspiring when I am sitting drinking a coffee at the beach. Some tell me I’m inspiring when I stick a coffee cup between my thighs and wheel over to the counter to get some sweetener. (Coffee is a lot of my life.) All of this is old news. Nothing to unpack any further – at least not for me. Lots of non-disabled people could benefit from spending some time going through this musty old trunk to sort out why their expectations for me are so low, why the very sight of me on the street inspires them, why they feel the need to tell me, a perfect stranger, what they’re feeling and why I should care and be obligated to demonstrate gratitude for being given this information.
But other times things fall into a grey area that is less clearly defined by the markers of ableism. Situations where I have done something – or more often said something since I tend to say a lot – usually related to accessibility or disability. I am still uncomfortable and have never been able to explain why until watching that video got me thinking.
So here are some of my thoughts. Let’s start with a situation that is arguably the most grey of the grey areas. I am at a meeting or have just given a presentation about something related to the topic of disability and someone comes up after and tells me I’m inspirational. It still bugs me. I am a person with an argument, a position I am advocating. I don’t want your ‘feels’, I want you thinking. Perhaps if the compliment was ‘the way you argued for your position was inspiring’ I would feel differently, but it never is. It’s never a compliment about my use of rhetoric or prowess at debate. It’s just ‘you’re inspirational.’ My very existence is a source of white light in their lives. Aside from a lot of pressure, it’s isolating, others me and gives everyone else present an out for not acting on the things I am talking about.
It tells me you haven’t heard me or seen me and are probably allowing your own guilt, discomfort, pity and whatever other weird emotions my presence has stirred inside you to colour your perspective of who I am and what I said. If we are on a committee together I am going to assume that at least once you disagreed with me and thought I was full of shit or was belabouring my point or off topic or just being a pain in the ass you did not need at that moment. I may have presented a position rather STRONGLY on occasion and interrupted you (apologies for the latter, I am working on that). But even if you can overlook all those things, what about the other people in the room? They participated. They said things. True, they may not have spoken as eloquently (I am joking here). Sincerely though, why aren’t they inspiring. Because I have sat there and listened and watched and never heard the people who tell me I’m inspiring say that to anyone else in the room.
But what if I gave a presentation that has to do with disability or accessibility? Isn’t ‘inspirational’ often the thing people say to people who give presentations? Maybe. If you are a person at an Anthony Robbins talk. But I am not, nor do I ever want to be Anthony Robbins. A motivational speaker is not something I would aspire to be and is the opposite of who I am and what I (hope and try to) stand for. That doesn’t mean there aren’t people and presentations who inspire me but those are people who have pursued their passions, taken risks, made sacrifices, worked hard to acquire knowledge and skills, developed their talents, cared for and about those around them in their communities, aimed for integrity in all things and been of service to humanity and who are now telling their story or presenting their finding.
Now consider me. I am not saying I could never be inspiring. But in these situations I am there fighting for room and air to breathe so I can dream, so I can be inspired and inspire. I am in a room yelling ‘help, emergency’ and the people in the room respond ‘you’re inspirational.’ Do you see how this is not the reaction I want or need? It’s especially telling that the one meeting I heard most about how inspiring I am was a meeting where people debated and deleted, watering down a request for action on accessibility.
I think what is at the root of what some people attribute to being ‘inspirational’ is ‘different.’ If I take the most generous interpretation of finding me inspiring for showing slides of broken sidewalks that is what it comes down to. Not just that I am different but that what I am saying is different. Conflating different with inspirational is a problem for many reaons. One is because in doing so you make yourself part of the problem; you are an atom in the anvil that holds me in place preventing me from reaching and being the genuinely inspiring person I aspire to be. What if you thought of ‘different’ as ‘hey wait a minute there’s been some injustice going on because this should not be so different from what I experience/know that it leaves me awestruck.’
Wanna know a secret? Accessibility is not the thing I want to study or work on. It’s not the thing I get excited about talking about. It’s not even an end goal. It’s a necessary condition for me to live. It’s a pre-condition for justice. I have dreams too. I have goals beyond bathrooms. If you find the fact I have to argue and fight (most often fruitlessly) for these things inspiring, you are part of the problem not the solution. If you tell me I am inspiring I am going to ask why and you better have a good reason.
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