I was asked to write something on ‘disability community’. I decided to add ‘identity’ as well.
I struggle with both notions as the basis for a discourse, but I acknowledge that there is something to them. How to engage with them in a useful way is something worth exploring.
I will discuss identity first, because it seems that it would be a necessary precondition for community.
I identify as a person with disability because it is evident that I have a disability, and because of that I will say “I am the tall guy with the blue crutches.” I probably don’t need to say “tall”, but I do. Both things are part of my identity.
My disability, and the experience of acquiring it, has transformed me over the past 13 years. I am who I am because it. While the physical side of the disability has seriously sucked, it has wrought spiritual alchemy upon me. I think I am a better person because of it.
I am intentional about saying ‘person with disability’ rather than ‘disabled person’. What is the nature of ‘person’ such that it can be disabled? One thing I think most people with a physical disability know is that they are not their body.
A few years back, before the NDIS was introduced the NSW Department of Ageing Disability & Home Care embarked on ‘person-centred’ service/support/ care philosophy for people with disability. To the extent that a person can be disabled, I imagined that might be through a psychological disability. But here I have problem with distinction between a disability and being disabled.
To me ‘disabled’ has a global sense of finality about it. This may be a cultural prejudice. I am used to reading of boats that were disabled – something that makes them completely non-functional. This is the problem with adjectives – they come to define the noun – person.
Being person with disability puts the person first, and it makes the disability an accompanying attribute, not a defining one. So, I am not going to allow that a psychological disability meets the adjectival character of disablement. I have friends with psychological disability, and they are not defined by it – or disabled by it. They are functioning persons. Whatever ‘person’ is, I do not believe it can be disabled. But it can acquire an attribute – a disability.
In these days when identity politics can be a minefield, I want to be clear that the politics of disability inclusion has nothing to do with identity – for me. Inclusion is a common human need, and the challenge I see has a disability focus – for me. Disability is my lens. I am true to the ‘motto’ of Inclusive Design – Solve for one, extend to many.
So, in sum, disability is a component of my identity. It is part of what makes me who I am. It does not define who I am. As I have written elsewhere, I believe disability is something we all experience, and are influenced by in some measure.
This is tricky. Community is such a complex word these days. Where there are two, or more, of us gathered, there is community, albeit in embryonic form often.
Community is grounded in shared experience. There was a time when that shared experience included spatial proximity as the most substantial attribute. That’s no longer the case, courtesy of social media and greater mobility.
I grew up, for a time, in small rural town in western Victoria. It was a community that shared the spatial experience of living in and around that town. But it was internally diverse; and yet it functioned as whole because of a mixture of laws (federal, state and local) and cultural norms. One community contained many smaller ones. And the smaller ones shared members with each other. But back then, we would not have used the word ‘community’ for the subsets.
Communities can be formed by shared experience that is profound and transformative. Veterans of military service have a shared experience because they begin in the community of their military unit, and then went to war together. The same is true of police, fire fighters, emergency services and others. Danger and trauma can create powerful bonds that are incomprehensible to those who have no experience of either.
The contemporary sense of community that is based disability is subtle. The experience is grounded in individual experience, and the bonds that make a community are where individual experiences intersect.
A few years ago, I set up consultations between staff with disability and my agency’s IT team. I ran separate consults with vision impaired and hearing impaired staff. There was a clear sense of shared experience as the staff in each group told of their experiences. It was the first time they had come together as a group with a specific type of disability being the qualifying attribute.
It was interesting to see that shared experience of a specific type of disability created a sense of community because of the common experience of exclusion to a greater extent than the shared experience of disability.
I have shared stories with colleagues who have disabilities impacting our mobility. They are bonding stories. They build connections. There are personal stories of an intimate nature that are shared only when trust and respect have been established.
The other shared experience is exclusion and inaccessibility, blended with discrimination that can be abusive, or verbal or written affirmations of care and support that don’t amount to anything – without determined advocacy. These are shared more readily, because the experience is public.
These experiences build Disability Employee Networks (DENs). In the spirit of my thoughts on identity, I want to think of these as Inclusion Communities. In fact, If In could go back in time, I would change DEN to DIN – Disability Inclusion Network. It’s not just people with disability who belong to this sense of community. The public experience of exclusion means that everybody (including witnesses and perpetrators) are potentially members as well – if they self-identify.
The building of a sense of community predicated on what denied, but what should be given, is something I am okay with. Disability is the focus because that is the shared attribute (experienced or witnessed). Inclusion is the goal. Network is the means.
I see myself as a member of a ‘disability community’ in two senses:
- A shared experience of personal challenge conferred by the disability. It is hard and it is sometimes painful. Last week I was getting my crutches out of the back of my car in an accessible parking spot, and I caught the eye of a woman getting her wheely walker out of her car boot. We looked at each other and nodded. Yeah. This is shit. Then we smiled. But its our life. Just because we don’t winge doesn’t mean we are having fun.
- I have been lucky in the inclusion stakes. I have had trouble with people who would have been unpleasant regardless. I am 185cms tall and I am used to standing up for myself. But the reality I live in is astonishingly inaccessible and non-inclusive. There are a lot of people with disability who do not have my confidence. And because I know that disability inclusion will benefit everyone, I am happy to be a member of the disability inclusion community.
Identity and community are powerful and important ideas that can become debased and trashed in the current political climate, where there is a lot of passion and intemperate expression of views.
Inclusion is difficult for many reasons that I cover in this blog. Intemperate emotions and poorly thought through arguments do not advance the cause. And even when emotions triggered by genuine pain and frustrations might be justly expressed, the harsh reality is that they turn the focus away from the causes of the exclusion – and put it on the complainant. That makes us the problem. Making inclusion real is hard enough without giving an excuse to deflect attention from the real problem.
Patient, persistent and polite is necessary. If we can express identity and community in terms that include those whose ideas, feelings and conduct we want to change, we will succeed. A well-grounded sense of identity and community can be the most powerful foundation for change we can develop. We can use identity and community to divide – or to unite.
If we want inclusion, we must be inclusive.