"I felt there was no space for me to express grief at my son's disability". The grief of those who care for people with a disability is betrayal of the Cause. Rahila Gupta asks: how do you value disability at the same time as mourn the loss of ability?
Most political movements at their inception demand radical resolution of the wrongs and injustices that they have been set up to overturn – and the disability movement is no different. My first brush with the movement happened in the 80s when I began the battle for a proper education for my son who had cerebral palsy as a result of a difficult and negligent birth. There was a huge amount of institutional oppression and individual prejudice which was hard to fight as an individual both in physical and emotional terms. There was no right to a mainstream education enshrined in the law and various groups of parents and carers of disabled children and disabled people themselves came to our support at critical moments in the struggle. As I had been involved in race and gender politics, it would have been a natural transition to become active in the wider disability movement, a transition I did not make and which I put down to a lack of time then. Gradually I became aware that there were some deep seated reservations which I had not articulated even to myself. Only now, ten years after I lost my son, I realise that the contradictions of the movement had me in a vice like grip which I can only now begin to untangle.
There is no doubt that the history of disabled people is littered with the most grotesque and inhumane attempts to wipe them off the face of this earth – even progressive socialists, like the Fabians, of the early twentieth century supported the idea of eugenics to create a super race until Hitler’s experiments with it consigned the idea to the scrapheap. Of course, the first step towards unwinding this hatred would be to promote positive images of disabled people, of the excavation of a hidden history of great contributions, of heroic stories, of moving towards light and glory, of asserting the right to exist, of being and becoming visible. It has been the inevitable pattern, with some variations, of the feminist, anti-racist and gay movements among others. But this is where the similarity ends, or should end. Whereas the attributes of sex or race or sexual orientation become a ‘handicap’ because of patriarchy, racism or heterosexism, there is a point at which impairment becomes a ‘handicap’ not merely because of disablism but a condition which can cause pain, discomfort, aggravation and frustration to the individual concerned, regardless of how far society travels in its attitudes and how far technology succeeds in bridging that gap.
This is not to promote the suffering, helpless victims deserving of charity narrative. Important insights have emerged from the disability movement which challenge those narratives, namely the distinction between the medical and social models of disability. The medical model sees disability as an individual problem to be ‘cured’ and ‘treated’ whereas the social model recasts this as a problem inherent in the way that society and the physical environment have been structured, so wheelchair users cannot attend a meeting not because they are in wheelchairs but because no ramps have been provided. As Vic Finkelstein puts it, ‘What was paramount was our focus on the need to change the disabling society rather than make us fit for society.’
I completely agree with the flaws of ‘the fit for society’ model. And yet, and yet what about being fit for your own sake?. Somewhere between the medical and social model stood individuals like me and my son. We did both: I campaigned for schools to admit him which meant they had to do a lot more to become accessible than merely provide ramps but devise and implement policies of inclusion and initiate a thoroughgoing change of attitudes. At the same time, I tried Botox on the advice of the doctors so that it might make his eating more efficient, his muscles less stiff and therefore less painful. He had operations on his leg muscles to prevent his hips becoming dislocated. He wore a variety of splints and braces, the line between chasing a ‘cure’ or increasing comfort often a blur.
The attempt to rescue disability from its tragic status tipped over into a glorification of disability. A similar trend was apparent in the early days of the women’s movement when it was impossible to be openly critical of mothers or to even admit the possibility that women could be violent. The great immigration lawyer Steve Cohen said towards the end of his life when severe arthritis had all but stopped his campaigning and writing, ‘I’m not disabled and proud, I’m disabled and pissed off!’ Like him, I felt there was no space for me to express grief at my son’s disability. It was the great unmentionable in disability politics - the grief of those who care for them. How do you value disability at the same time as mourn the loss of ability? By separating the disability from the person, by valuing the disabled person, would be one answer, another version of the biblical exhortation to ‘hate the sin but love the sinner’. It is, of course, hard to separate these in practice: the disability is so much a part of a disabled person’s identity that any comment on the disability feels like an assault on the person. I raised these knotty questions in The Ballad of Nihal Armstrong, a dramatic monologue performed at the Arts Theatre in London last June, in which I recount the story of our struggle and triumphs in the fight for my son’s rights. Perhaps it is the intense love for my son that permeates the Ballad that gives me the ‘permission’ to mourn his loss of ability.
There are some who see disability as a gift, a position which finds particular favour among religious groups. Eleanore Stump, an American Professor of Philosophy, argues that suffering makes one grow and narrates approvingly the story of a mother with an autistic child ‘who came to see that even the suffering (i.e. her autistic child) of her life was a gift’ in her book, Wandering in Darkness: Narrative and the Problem of Suffering. The language and perspective of this position, while trying to be positive, would be dismissed by most disabled people because of its equation between suffering and disability.
This idea of disability as a gift, as something special and worth reproducing was taken to its logical, but in my view extremely troubling, conclusion by a deaf couple in 2008 who wanted the right to select an embryo with the deaf gene. They wanted their child to be part of a proud linguistic minority although it was not clear why a hearing child could not be brought up in that culture with the additional advantages that hearing brings such as the ability to enjoy music. The argument as seen from the perspective of the disability lobby is twofold: an interpretation of equality, if you have the right to discard a deaf foetus, you should have the right to discard a hearing foetus rather than an equality between people with more strings to their bow; and doing anything that reduces the number of disabled people in the world is evidence of discrimination, an argument that underpins the opposition to abortion and the right to die movement.
Definitions of impairment are becoming wider so that, from some perspectives, the size of the disabled community in most societies is larger than ever. Laying claim to greater numbers has often been the strategy used by minorities to tackle their powerlessness – black people claiming powerful ‘white’ men and women rumoured to have black antecedents as their own, for example – although as we have seen numbers are no guarantee of increased bargaining power as women are still widely oppressed.
As political movements mature and strengthen, they move from striking either/or positions to a recognition of the complexity of human situations and responses. Having established its presence, a movement does not feel threatened by a multiplicity of opposing views. I believe the disability movement is at that point. Baroness Jane Campbell, Commissioner of the Equality and Human Rights Commission (EHRC) said in 2008, ‘I believe our position as disabled people is fundamentally different to what it was 20, 10, even 5 years ago. I believe we have a powerful voice.’ She argues that is time for the disability movement to join forces with other disadvantaged groups, even carers, because ‘the ideas of the disability movement – barrier removal, reforming public services to give people greater control over their own lives, and equality legislation based on accommodating difference rather than ignoring it – are the blueprint for the next stages of promoting equality and human rights overall.’ The movement should be ready to accommodate a carer’s perspective without feeling threatened and to explore the contradictions that dishearten potential allies.