Okay, big topic, plenty of toes to step on. Let’s see how I go!
I personally do group Mental Illness in with other Disabilities. Speaking as someone who has a number of disabilities in various areas – psychiatric, chronic illness, learning, and at times mobility related (eg. I’ve spent a couple of years in a wheelchair) I’m in a good place to compare and contrast.
There are some really good arguments against treating Mental Illnesses as Disabilities. One of them is that disabilities tend to come with the perception of lasting a long time. Doing anything more that makes people feel they will not or can not recover from or live well despite Mental Illness is not a good thing. Another one I’ve heard is that people feel that the word disability is so negative, it immediately obscures everything they feel they’ve gained through their experience of Mental Illness. People point to their creativity, self awareness, drive, passion, empathy, sensitivity, resilience and say ‘Is this a deficit? I think not!’ Those who reject the medical model aren’t happy about the label ‘mental illness’ being applied to their experiences, which is pretty understandable. They tend to be even less thrilled about being grouped in the disability box too!
My experience has been that most folks who find themselves in this ‘disability box’ feel much the same way. The first experiences of someone sectioned in a psychiatric hospital are often absolute horror at being trapped in with the crazy people. Suddenly faced with a ward full of people who are weeping or medicated to sleep or talking to themselves or wildly unpredictable, most people are mortified at the implication that these are their people. That as far as society is concerned, you are one of them. Folks disabled suddenly often struggle with the same massive identity shift, confident footballers left paraplegic following accidents are stunned to find themselves now thought of and spoken of as a disabled person. As with mental illness, often some of the greatest harm is done not by the actual condition or limitation or experience, but by the terrible stigma that accompanies it.
Those of us who have prided ourselves on our independence, strength, productivity, cheerfulness, generosity are bowled over by the shock and stress of having to see ourselves completely differently and struggling to maintain our sense of self and self-esteem when everything we used to rest it on gets taken away. Sometimes we are forced to confront ourselves as dependent, vulnerable, exhausted, irritable, and the recipient of care rather than the giver.
People with disabilities often express deep frustration that their limitations are constantly given more focus and attention with their capabilities. The entire disability sector is attempting to reduce stigma, redefine horrible labels, and draw attention to the incredible array of skills, gifts, interests and talents that people with disabilities have. Some of these – as in the case of superb hearing, are a direct result of the disability such as vision impairment. Many people with disabilities talk about what they are able to do, and how so much of what holds them back and restricts them has nothing to do with their condition and everything to do with stigma, discrimination, and lack of awareness.
Disability tends to evoke the idea of a life-long condition. For some people this is the case. For others, a disability of some form is temporary. They may heal, be cured, grow out of it, adapt to it, recover. This misconception about life long doesn’t fit a lot of people.
My experience has been that everything we hate about the disability label, is everything everyone else in the disability label hates.
For those who do not consider their experiences to be ‘Mental Illness’ and do not see them as a limitation of any kind, it’s entirely understandable that being asked to view them as a disability would be deeply unpalatable.
There are many definitions of disability, including social constructs that view the limitations as being socially created (through lack of access etc) rather than oriented within an individual. To bypass some very complex conversations for a moment and use a very primitive definition of disability – a limitation of some kind for which you need support, assistance or a different approach to be able to do something someone else your age could do – then it’s true that there are experiences currently called Mental Illness that do not fit this definition. Voice Hearers who live well with voices that cause them no harm or detriment are right to be uncomfortable with being classed as having a disability. We are not the only ones who feel this way, there are other people who have been traditionally grouped in the Disability sector who have fought to not be considered part of it anymore. Two big areas are those of the Deaf Community and some folks on the Autism Spectrum. I think we can learn a lot about our relationship to the Disability label by observing the dynamics of other groups and their stance.
A big portion of the Deaf Community have argued that Deafness is a cultural state and in no way a disability or limitation of any kind. With a history of appalling treatment by well-meaning hearing people who banned sign language in a fairly futile and certainly traumatic attempt to make deaf children communicate ‘normally’, there are now many deaf people who have so divorced themselves from the disability sector that when a woman recently spoke about curing the world of the scourge of deafness, this community was furious at what they perceived to be an attempt to annihilate their kind. They point out that within their own communities with things set up for them they are in no way limited or disabled. The separatism in some areas is so extreme that some hearing parents are afraid of the Deaf Community ‘getting hold of’ their children and entangling them in a social hierarchy that confers status on the basis of degree of deafness and deafness in your lineage. The Deaf Community is desperately underfunded, there is a chronic shortage of money to pay for translators to enable Deaf people to further their education, interact with their own doctors, and function in a hearing world that largely ignores them. The arguments about cultural pride can be so loud that a newly deaf person who is shocked and mourning a loss of a sense they valued has no voice.
Some in the Austism Community, Auties (those with some form of Autism), and Aspies (those with Asperger’s, ‘high functioning’ Autism), have also rejected the disability label and embraced Spectrum Pride with enthusiasm. Those who are ‘high functioning’ point out that they do not perceive any limitation or disability arising from their condition. They talk about how we have pathologised a normal variant of the human condition, and that efforts to help them are little more than attempts to coerce them to conform to social norms and values they have no interest in. There are a lot of parallels here. In some groups, separatism is becoming extreme, Auties and Aspies spending time and forming relationships exclusively with each other, talking in stereotyped and derogatory ways about ‘Neurotypicals’ (the rest of us) who lack creativity, innovation, strength and are examples of lesser kinds of humans. Autism is generally considered to be responsive to significant, quality early intervention, which is highly expensive. Autism support is also desperately underfunded.
There is a conflict here. People are trying to find frameworks that are respectful and dignified and acknowledge that for many people given a label, there are no limitations beyond that of stigma and small mindedness. That the world and people are incredibly diverse and there is richness in acknowledging that and joy in being proud of it instead of characterising it as a defect. This is so important!!
Those in the disability sector who have an illness of some kind rather that a condition that is stable and non-life threatening don’t tend to lean towards the ‘Pride’ movement in the same way. Rather than being offended by the prospect of cultural annihilation, they are tired of pain, weary of medical interventions, afraid of early death, struggling to survive. There is great pride in what people are able to do despite their illness, but the illness itself is often perceived as an enemy that takes much away. These people usually want to be cured, their conditions rob time, dignity, comfort, fertility, and life.
And then there is the need, the reality that at the other end of the spectrum, where the voices are abusive, where the autism is severe and terrifying, where the deafness leaves someone isolated, distressed, unable to complete schooling, there is great need. When we allow our most functioning representatives to shout about Pride, the cruel reality seems to be that our most vulnerable people go without funds and services. Funds and services are provided for people who need them. If there is nothing wrong with us, if we are just diverse, if we have no limitations and are not disabled, there is no need for funding or services.
I am very wary of freedoms that are purchased at the cost of someone else. It is not only the wider community that can be discriminating, negatively stereotype, dis-empower and harm. Sometimes those of us who have received the most appalling treatment are at the highest risk of reacting against it by building our own worlds on the same principles.
I am wary of those of us who know the pain of stigma making decisions about how we see ourselves and our group on the basis of stigmatising misconceptions about other groups.
I think we make things better from within, together, rather than splitting off and saying ‘we are not like those other people’. I think we fight to reduce stigma, to create pride and joy and celebration of all diversity, not just our own. I think we who are least limited and have the most voice owe those who are most suffering. We overcome stigma and discrimination when we stop dividing people up into camps and defining ourselves as different from – better than, those people. We build a better world when we stand together and say – see these people with intellectual disabilities? These are my people. See these ‘mad’ people in the psychiatric ward? These are my people. People with autism, with MS, with delayed speech, with social phobia, with downs syndrome, with acquired brain injury, people who are isolated, friendless, suffering, people who are incredible, resilient, creative, these are my people.
These are our people.
We all deserve self-respect, and we all deserve support when we need it.