Disability: a rights issue, not a charity case
Having recently celebrated the ten year work anniversary of two of my staff, I canâ€™t help but thinkÂ how much Interchange has changed over the last decade. Back then, we only had ten staff and 30 clients. I was originally seconded to Interchange to determine its financial sustainability. But being a sociologist rather than an accountant, I was more interested in building a new kind of service model based on the principles of full inclusivity.
Sure, Interchange was broke but this was easily fixed: we individualised all funding, took 12 per cent for admin, and kept 3 per cent as margin via the skinny back-end. We were soon back in the black and back in the game. The harder part was changing culture. But we burnt off the dead wood and tended new growth and soon had our service out of the shadows. Yet this meant being very clear about our values. And this is what we came up with: Disability is a rights issue, not a charity case.
Most people recognise and deplore discrimination based on race, class, gender or sexual preference. But what about disability? Where does that fit in the civil rights handbook?
In short, segregation IS discrimination. â€œCommunity Inclusionâ€ thus became the Interchange cypher for equality, freedom and justice. It was a bit like the French Revolution or 1960â€™s â€“ but writ small. We can laugh now, but disability rights ARE human rights. And people with disability still face discrimination based on appearance, intelligence and mobility. Our intentions were authentic but ideal, so we vowed to start from first principles and to practice what we preached.
Demanding a more tolerant and welcoming world, we needed to model a service that embraced our customers in the same way we insisted the community embrace each person with a disability; namely â€“like they donâ€™t have one. The message from Disability Services Commission (DSC) at the time was this: See the person, not the disability. But we took the maxim to its next logical step: See the person, not the disability Agency.
Could Interchange even exist if we based it on this premise?
The financial crisis was now an existential one. Hereâ€™s the problem: If you highlight the support, you highlight the disability. You donâ€™t assist a person to integrate into the community by wearing a uniform and ordering their meals for them and fussing over them in public like you would a small child or an ailing aunt. Rather you wear normal clothes to blend in with the customer and then subtly facilitate their independence, free expression and cultural agency so as not to diminish their social identity as dependant on your own.
So, apart from replacing our centre-based activities with community-based learning, we banned uniforms and badges and advertising on all vehicles. We took down the signs from our offices so the word disability could not be seen. We eschewed glossy brochures. Nor did we care much about diagnostic assessments and medical prognostication. Staff were not forced to read up on Autism, Down Syndrome or whatnot but encouraged instead to treat every person as a unique individual, without preconception.
We werenâ€™t big on goals either. Or plans. We considered it presumptuous and patronising to expect set outcomes from customers. How many able-bodied people have one year plans with every activity mapped out in advance? Where is the dignity and choice in that? Donâ€™t young people just like to â€œhang outâ€ sometimes? This meant we also wanted diverse and â€œcool-lookingâ€ staff to mirror the norms of contemporary youth (sometimes including tattoos and scruffy clothes) so that customers felt part of a larger albeit sub-group â€“ unpatronised, less ostracized, with a sense of belonging. People with disabilities have the right to look cool too.
The formula underlying this new service model was that the label of disability was more discriminatory than the so called disability it enunciated. Disability is a social flaw, not a medical condition. People with disability wouldnâ€™t even need any agency support if the community itself was more accessible, welcoming and supportive in an organic and inclusive way. In fact, the word â€œdisabilityâ€ would probably not even exist except as a semiotic relic, like the word ‘race’ or ‘proletariat’.
We also believed â€“ and still believe â€“ that people with disability need to be seen and celebrated as fulfilling more valued and normative social roles than the hackneyed and reductive scripts theyâ€™re currently forced to perform: as outsider, victim, patient, adult-child. Nor do we need another Rain Man or Forrest Gump. People with disabilities donâ€™t want to be special, they just want to be normal! To be accepted without a second glance. To live beyond the label.
People treat other people according to a given status, based on labels tested against lived experience. Yet itâ€™s the label itself and not what it designates that is often the problem.
Consider race, gender and sexual preference. Surely the last century has demonstrated that the label is the problem, not the person it points to – or at! So too with disability.
Women didnâ€™t get the Vote by pretending to be men. They organised themselves and fought for equal rights in spite of gender. However, Interchange assists many people with complex-needs who would have difficulties organising themselves into a political movement, for example. So the fight for equal rights, equal access and equal opportunities for people with intellectual disabilities is more complicated than what it is for those people with physical disabilities or those suffering under racial, sexual or class stereotyping.
Ideally, we never want to speak FOR the disenfranchised but rather WITH them. Yet sometimes we must be their voice.
These are the ideals which underwrote the reorganisation of Interchange as I remember it ten years ago. We still hold those values true but some things have changed. For a start, we quickly realised that the community, not to mention many families, were not yet ready for such rigorous praxis. Many of the ideals we ascribed to were simply unrealistic considering the very real and ongoing medical, behavioural and psychological needs of our customers. Training is important. Expertise does not always lead to paternalism. The duty of care must ultimately trump the dignity of risk. Funding brings governance, rightly so.
In successful multi-cultural societies a personâ€™s race and religion are no longer primary or even secondary designators of individual identity. It should be the same for people with disability. But the way to achieve this level of acceptance is not by pretending that the disability doesnâ€™t exist -Â sometimes people really do need help. But rather by accepting that everyone has disabilities in one form or other and that society can still accommodate us all.
While we donâ€™t want the community to stigmatise our customers by seeing their disability as the primary signification of cultural worth, we now understand that the disability itself (even if so labelled) and not just the person with that disability must be accepted and even embraced as just another shining strand in the complex web of life.
There are two ways of nullifying the prejudice embodied, sustained and transmitted by the word disability. One way is to get rid of the label altogether. Remember, its the label in itself that highlights the difference that underwrites the discrimination, that in turn underscores the original marker of difference that generates the secondary discrimination. And so it goes on. We wanted to disrupt that self-sustaining circle â€“ as if cutting Gordianâ€™s Knot â€“ by slicing off the label and then simply hiding or ignoring the disability to thereby reveal the human sameness underneath.
While our mission remains to that end, our means must engage the conditions at hand. Ideology must be tempered by pragmatism. Besides, what worked ten years ago for a small organisation in one community setting might not work today for a bigger agency in a more sophisticated, educated and multi-cultural society. We can reduce disability by hiding it, by rising above it, and by refusing to be defined by it. But there is another way. We can also reduce disability by simply embracing it, by naming it, owning it, giving it oxygen, currency, and cultural credibility. This is normalisation theory reframed and reborn in a multi-cultural context.
Weâ€™re probably stuck with the word disability. Itâ€™s as good or bad as any other label. Yet we need to recuperate this word in an ideological sense: to not only normalise the name as natural, but celebrate the mark of difference it articulates as integral to the collective diversity of our very humanness; namely â€“
We must strive to change the way people think about and define disability to end the stigma it evokes, and to promote the belief that disability is a natural and beautiful part of human diversity in which people living with disability can take pride.
One of the things that helped refine my thinking on these issues is (ironically) the establishment of the National Disability Insurance Agency. It is tempting for cultural critics to see the NDIA as just another bureaucratic behemoth and instrument of social control to assuage the contingent needs of people with disabilities, without addressing their cultural causes and conditions in the community at large.
Yet I agree that the NDIS will give customers more choice and control over their funding and services. Thatâ€™s good news to be sure. But what I am really excited about is this: by making disability its own (and yet just one more) government department and public service, disability and disability supports will be normalised as just another service within an inclusive and our multi-cultural society.
In other words, because the reach of the NDIS is so aspirational and expansive, it dilutes rather than aggravates the stigmatisation traditionally attached to the label of disability.
For example, we donâ€™t feel disgusted or envious of people who use Medicare or the State Library. Nor do we resent cultural sub-groups who require targeted and sometimes segregated services to identify, accommodate, and ameliorate the social stigma previously attached to their shared identity through historic discrimination.
If disability becomes a natural part of being human and is accepted and even embraced by the community, and if people with a disability thus have no reason to hide their disability in fear of discrimination or ridicule, then Interchange itself will become just another service provider in the rich tapestry of social supports for maintaining equality and full citizenship in an enlightened Australia.
Social Justice achieved, the role of Interchange would become merely generic, its mission redundant.
And that remains our goal. But meanwhile, we are hoping that the establishment of the NDIS will function to normalise disability and thereby eradicate its currency as the marker of discrimination. Weâ€™re not there yet. Community attitudes still need to change. But the way to facilitate those changes is to no longer hide the disability, but to highlight it. Disability is merely diversity, and it is sometimes necessary to focus on superficial differences in the pursuit of essential sameness. This is one of the lessons I have learnt over the past ten years (amongst others, less subtle).
So we must remain vigilant in protecting the integrity and rights of our customers. They are not sick. They are not children. And they are not even customers! We do not have to define ourselves by the labels thrust upon us by history and happenstance. Yet we are free to acknowledge our differences as the unique expression of our collective diversity. Hence, disability must be normalised and even universalised. This is the hidden hope of the NDIS.