I am grateful to the Canadian government for amending the now little heard refrain – Nothing about us without us – to – Nothing without us.
I was reminded of this recently in conversation with some fellow members of our local council’s Access Advisory Committee. We were meeting with representatives from the National Parks & Wildlife Service to discuss development of a parking area at a very popular site. There were 2 existing allegedly accessible parking spots, but the wheelchair user had demonstrated that there was only one. She needed the other spot for her side ramp. I had to park elsewhere.
We had a lengthy conversation about the realities of accessible parking spots. We are looking forward to seeing how our input will be translated. Apart from the wheelchair user, there was a woman who used a wheely walker. I had my ever-present Canadian crutches. We were a fair representation of people with mobility challenges whose needs for accessible parking varied.
It is worth noting that as we talked the carpark was steadily filling up. It became evident that the existing regular parking spots were way too narrow for all but the smallest cars. It was a chance to argue that maybe the new parking area might have larger bays. Lots of people would benefit – pregnant women, parents with toddlers, large people, older people who just need a bit of help to get out of the car.
Given that the priority of the development was to increase capacity I don’t think there will be any will to sacrifice numbers for width. But we may have made a compelling case for a safe and sign-posted drop off and pick up area. Not a perfect solution by any means, but better than what was planned.
This got me thinking about who speaks for whom. Solve for disability and everyone can benefit. But the emphasis must be on ‘solve’, not just talking – so who speaks matters.
A friend recently told me about having to endure a briefing on disability by a person with no evident disability and who made no claim to have one. The presentation carried an evangelical tone and had a lot of ‘mansplaining’ content. The audience wasn’t unfamiliar with disability, but the speaker assumed they were. It’s an easy guess the speaker had no disability and was new to the theme.
The theme of the talk concerned a policy area that has been a sore point for people with disability for a few years now. I was having discussions about it in 2019. There’s nothing complex or difficult about it. It just needed action.
I am not going to suggest that only people with disability should work on disability related policy, but there should be adequate representation and that means numbers beyond tokenism and with sufficient authority to have influence.
Having existential skin in the game is a key to making progress and driving positive change. There is no substitute for the intimacy of lived experience – to give subtlety of insight and urgency of action.
My friend’s experience bodes ill. The messenger had no heart, no insight, no urgency, no feel for the need, or the form fulfilling that need must take. The messenger spoke aboutpeople with disability, not for. That’ the difference.
I do not excuse the intent, because that was to act on terms that suit those with no existential skin in the game. Ablism still dominates – controlling what challenges are considered, how those challenges are defined, and how a response is crafted. What was a live issue 4 years ago remains unsorted. A small team of people with lived experience of disability would have had a solution the issue by now. We have a sense of urgency others without lived experience do not get.
Ablism is dominant because people with disability are a minority. But its not about numbers. Its about whether the majority is inclusive, and that means whether it is empathic and insightful – responsive to lived experience in a way that triggers a sense of urgency. Inclusivity is not an intellectual exercise. It is not a philosophy. It is a heart response that recognises a person with disability is one of us [and that goes for every instance of apparent difference]. We are wired to look after our own. Inaction prevails when those who might benefit don’t sufficiently belong.
It’s not okay for anybody to speak on behalf of those for whom they do not have a sense of kinship at a level that triggers a need for urgent action. We can negotiate how urgent, but a sense of urgency must be the ever-present backdrop. The right to be included isn’t a gift to be bestowed when its convenient and expedient to do so.
Who is speaking for us?
I was sent a link to a story about a person described as a disability advocate. They have a website which I checked out. I sent an email in the hope of triggering a conversation. No response.
I think we need to distinguish between people with disability who carve out a place in the public spotlight and who are a positive representation of a person with disability – and actual ‘advocates’.
This was brought home to me a few years back when I had a lengthy conversation with a person who was once prominent. I am not going to identify them because I want to make a point and do not want to seem to shame them. They were paid good money to speak at an event and were introduced as a ‘disability advocate’. But their knowledge of disability and related issues was scant. They had the decency to be embarrassed when this became apparent.
I do not begrudge people with disability and the ability to make it in the public eye. The opportunity to generate an income is important. Done well it sends a positive message as such people are attractive and entertaining. There are, for instance, some great comedians with disability. But this isn’t me. I am an introvert. Still, I can celebrate the extrovert and wish them all success.
But being entertaining and a likeable representation of a person with disability doesn’t mean you are an advocate in the full range of meanings that are possible. But maybe I am just being hung up about the meaning of that word. I can be a bit pedantic at times.
These people are, in a sense, advocating for people with disability – we can be outgoing, nice, friendly, entertaining, and amusing. We can be included! Yeah, but we can also be introspective, cranky, and challenging to engage with. Our entitlement to equity and inclusion isn’t dependent on whether we amuse others, or are even liked. There’s a risk here.
I wrote an earlier blog essay in reaction to a person was styled as a disability advocate on a current affair show. I thought their interpretation of a scenario was misguided and not in the interests of their client. It seemed to me they had issues they needed to sort before becoming an advocate.
Advocacy is not a simple thing, and I may be guilty of having a fixed idea of what it is – and hence disappointed when others don’t live up to my rigid interpretation. That said, it is an important function whose relevance will not diminish any time soon. We still need whatever can be offered [so long as it is competently done]. But we must be careful of what we assume the word means – and what consequence we imagine flow from whatever form of advocacy we accept.
The illusion of diversity
Having a person with disability on a panel or a committee is not genuine ‘representation’. Having at least 3 is better, so long as they don’t have the same disability type.
I have a mobility disability. When I became DEN [Disability Employee Network] Chair, I was expected to represent all staff with disability. I created the Guidance and Action Team [GAT] of 15 members. I had constant input from DEN members with a variety of disabilities – blind, deaf, autistic, living with chronic degenerative disease or mental illness, and mobility disabilities. I was schooled, sometimes severely, for several years when I got things wrong, had stupid ideas, or just didn’t get an issue. I got ‘guided’ passionately.
I could represent me perfectly well, but all the members of the DEN? It took a few years before I felt confident doing that. I had a lot of conversations – many I cannot use in essays because of the level of personal detail. Representing people with disability isn’t easy. There’s a lot of work to be done.
This means that thinking you are being diverse and inclusive by having one person with disability involved in whatever you are doing is nice, but wrong in how that good act is interpreted. The problem is that we naturally assume one person is representative of a whole set, rather than seeing them simply as a non-representative, but indicative, member.
Diversity is a powerful and important idea, and every step we take toward it benefits us. But there’s a difference between being committed to diversity and imagining that having a ‘representative’ from a given diversity set is ‘job done’. They could be a mere token to comply with some bothersome policy. Or worse, an ableist evangelist with no clue at all and a ton of self-referential zeal has decided they have a mission.
If you want feedback from people with disability on, for example, a committee you need at least 3 people with different disabilities – and even so you will still have only an indicative, not a representative, view.
Indicative views are invaluable if they trigger more insightful and empathic responses. But please, think ‘indicative’ rather than ‘representative’. And never let the ideal be the enemy of the okay. If one is all you can get, that’s okay – just see the situation for what it is – indicative, not representative. Fight for more.
Representation is a great ideal to aim for, but if we understand the diversity of disabilities and how they are experienced we must also understand that ‘indicative’ is probably the best we can do. That makes it more critical to choose who speaks for us wisely. As I have shown, advocates are neither uniformly performing the same role, nor necessarily knowledgeable or competent. The same applies to ‘representatives.’
Disability is diverse in its manifestation and how it is experienced. The best we can aim for is to stimulate empathic loving responses to each individual with disability.
The Canadian government understands that everything matters. Nothing in the span of government does not impact people with disability. But governments can turn any good idea into a quagmire of delay and misdirection. Living up to good intent demands commitment to action, not just sentiment, and a willingness to be open to corrective suggestions.
That means representation is critical. Who speaks for us matters. In New South Wales the Disability Council’s membership is controlled the Department of Communities and Justice [DCJ]. The government gets to say who speaks on behalf of community members with disability. The DCJ website says, “The Disability Council NSW is the official advisory body to the NSW Government on matters relating to people with disability and disability inclusion.” Calling it an official advisory body means it is a non-representative filter that will screen out what the government does not want to hear. It is, in effect, an executive conceit to imagine that representatives can be selected by public servants [with no transparency about whether any of the people involved in the selection were people with disability] and approved by a minister. There are no activists on the Council. Why do you think that is?
Beyond government, the voice of people with disability is heard in different ways. But it also spoken through different representations of the lived experience of disability – and with different motives. A passion for disability as a theme will include self-interest. That’s fine. It’s okay to have self-interest in performing a role. We all do it. But let’s be clear that there is a balance point beyond which self-interest becomes a conflict of interest.
Disability Inclusion is complex if you want to style yourself as a representative or an advocate and do a decent job on behalf of people with disability in general. A personality or an entertainer with disability is free to trade on their attributes. But if their disability is a feature and part of their act the community must not burden their right to be entertaining for money with an expectation of representation or advocacy on behalf of people with disability generally.
Moving people with disability out of the shadows so they have an equal spot in the public eye is vital. They must be seen as performers and entertainers in their own right. I think we are in a transitional phase when public and popular manifestations disability are still a novelty. Being entertaining and endearing still matters, whether you have a disability or not. Being entertaining and endearing with a disability – and in the public eye – is novel. Novelty isn’t representation or advocacy. It may be an aspect of it.
Advocating for acceptability as a public figure, or even a visible one, is only one aspect of what advocacy must be. I dare not attempt to make competitive comparisons. What I do know is that Disability Inclusion is complex and takes skill and knowledge. Please, don’t mistake one aspect as including the other.
And to those who have no intimate lived experience, no existential skin in the game, you are warmly welcomed as an ally. Your open heart is so appreciated. Do speak up for us whenever you can. But please, don’t speak for us. If we are not there to speak for ourselves, speak up and help us get there.
Please understand that the intimacy of lived experience and the reality of having existential skin in the game generates a sense of urgency and an outpouring of empathic connection that can’t be replicated or fabricated.
It could be that promised changes haven’t happened because we haven’t allowed the ‘right’ people to speak or be listened to. It has taken decades to carve out incremental changes in a climate of overt expressions of support. Who speaks matters. Who you listen to matters. Do you know who they are?