Themes: Culture and Participation
Telling our truth is part of the struggle for a fairer world
Starting a business is a brilliant distraction from having a breakdown
2016 was a pretty exciting year. I co-founded the GDI hub; got to share our story at the Paralympics in Rio; did my Masters in Social Development at UCL; got divorced and had what might be called a breakdown.
I like to see myself as competent, so I adeptly made sure that my diagnosis of depression and anxiety didn’t stop me setting up our organisation or finding new funding or partners.
But in the few hours when I stopped using work as an addictive distraction (hardly ever!) I was so anxious and depressed I started to become really quite desperate.
A year later, I’d tried everything; I took medication, I exercised regularly, I quit drinking; I ate well, I tried to meditate but my daily experience of life was entirely joy-less.
My co-founders stepped in when terrifying work situations overcame me, and I put on a show. Inside I was living in a dark, painful, lonely place… but because I could still walk, talk, and work (most of the time, when the inertia didn’t floor me) I felt like I should just pull my socks up.
The irony of this being my personal story or setting up the GDI Hub, yet never talking about it, isn’t lost on me. As a queer woman, I thought I’d done all my coming out two decades ago, but one of our board members recently convinced me that maybe this is important too.
Why I care about disability innovation
Wherever I am in the world, ministers and managers, funders and founders ask me why I care about disability. My answer often depends on the context but usually goes something like this: I’ve been fighting for social justice since I was old enough to campaign.
Disability is a fundamental issue of exclusion and I see disability justice as both a necessary factor in our collective struggle for a better world and a vital step on the road towards treating every human with dignity and respect.
Disability Innovation is something I’m passionate about because it enables us to bring creative solutions to intractable problems; solutions which put communities at the heart of the decision-making process and promote participation and autonomy.
What I never say, because it is too un-political and frankly untrue, is that my personal experience of impairment drove me to this line of work. So, when I’m asked if I have a disability I don’t really know how to answer.
When I’m asked if I have a disability I don’t really know how to answer.
Disability as a non-binary concept?
I often find myself wondering if disability is even a binary concept; what if disability was considered as a continuum rather than binary since models of disability vary and rarely agree on where the disability/non-disabled cut off point is? I think this has particular relevance to the geographical and cultural contextualisation of impairment-based oppression.
Consider then: Does being a wheelchair user in London hamper life more or less than experiencing a miscarriage in rural Kenya? When does creeping depression become disabling; when it affects a person’s life (and how so defined), or when they ‘come out’ about it publicly?
Is someone with Cancer disabled? What about in recovery? If a person is living with pain that could be overcome with simple drugs, they can’t afford is their exclusion physical or financial? When does older age become a disability?
How about a culture that doesn’t recognise individualism; where concepts like ‘ubuntu’ make it unhelpful or even odd to present the disability of a child as separate from the experience of a parent?
I suggest that in a world where gender and sexuality are understood as more fluid, Disability could work better as a flexible, contextual, relational concept than a binary definition of what someone ‘has’ or ‘can do’. This is why I don’t emphasise what ‘does and doesn’t count’ as disability in my work or spend too much time on definitions which have different contextual meanings anyway.
One (erroneous, I suggest) extension of this argument though is to explain away the need to focus on Disability at all in favour of ‘people’ as central, recognising the diversity of everyone. The danger here is that a broadly positive approach to diversity which doesn’t actually deal with the specific issues people with impairments face with enough focus effectively excludes by default.
I am not making an argument to override the social model, though perhaps what I am saying falls more clearly in support of the Bio-Psycho-Social (Shakespeare, 2014) approach.
Of course, we must uphold the importance of disability rights activism, autonomous movements and legal status, but in a global context policy only goes some way toward change; much of the lived reality for poor disabled people relates to their poverty and their community as well as disability.
What I learned this year about how to change the world
The way I have seen it —in fifteen countries last year— cultural change is the crux of the issue and must be coupled with participation by disabled people in all aspects of society.
That comes down to confidence, acceptance and belonging as well as an accessible environment or assistive technology.
Attitudes change fast when they change, see for instance: London 2012 Paralympics, or Monica who has a visual impairment and nearly won Housemate Salone, one of the biggest reality tv shows in Sierra Leone.
In a moment, things can become very different for people with a certain identity in a certain country if they are accepted into their community because of a cultural shift. This is why the arts and media are so important to our struggles and why I’m captivated to think more about what GDI can do in this space.
I am interested in how we can move beyond the binary distinctions to fight for the kind of cultural shifts which see our nuances rather than just our binaries.
I still have bad days, and sometimes those bad days are when I’m interviewing wheelchair users without wheelchairs in a slum area of Freetown or Nairobi and in that context is really hard to imagine how my conditions would be compared on the same continuum as theirs.
But what unites us is our collective aspirations for a fairer world, and to do what we each can, however small, to create it. And that —it seems— involves telling the truth about our own struggles.