Not knowing what was "wrong" with me; being blamed for what is "wrong" with me; fighting to find out what is really "wrong" with me; and fighting to recognise and to get recognition of what's "wrong" with me and what is not.
Waiting to get better; waiting for a cure to be offered; fighting for a cure to be offered; accepting that there are no magic cures . . .
Belief in the medical profession and in science; gradual disillusionment; fighting the medical profession; finding better doctors; but still feeling vulnerable and powerless every time that I come into contact with the medical world.
The gradual realisation that control of the body is limited and for the most part an illusion; that there is no mind/body divide; and that our bodies are in the end our destinies.
Learning that private medical treatment can be a negative choice: that rather than being "queue-jumping", payment is often the only means of obtaining appropriate treatment; and that obtaining treatment is often dependent on the ability to pay.
Learning to take my clothes off regularly in front of perfect and not-so-perfect non-disabled strangers; to talk about my life in the most personal detail in order to access medical care, welfare benefits and social services; and to suffer more pain voluntarily in the process or just the hope of temporarily or permanently reducing my pain.
Accepting that sometimes you gain more control of the body by handing it over to other people; and that sometimes you have no choice anyway.
Not wanting medication; fighting for the right to medication; fighting to find the right medication; and coming to terms with the fact that the medication which now makes life bearable could be responsible for shortening my life, or even for causing my death.
Losing my image of my future; losing myself almost permanently in the process; mourning the person who I was; changing the person who I'd become; and finding and accepting the person who I am now.
Losing the relationships which I had with my partner, family, friends and colleagues; changing the relationships which followed; gaining new relationships; and trying to accept the reality, including the shortcomings and the strengths, of all the ones that I have now.
Realising that I am disabled, after failing to recognise myself in society's stereotypes until someone else pointed it out; and recognising that many of the experiences which isolated and isolate me are in fact shared with other people who have physical impairments and/or learning difficulties and/or are survivors of the mental health care system.
Learning what being disabled by society - not by my impairment - means: the labelling of us as abnormal, defective, deformed, invalid, incapable, asexual, genderless; the refusal to recognise our right to live independently; the emotional, verbal and physical abuse - which often goes unnoticed, either because it has always been the norm for us, or because we accept society's judgement of us and think that we deserve it; the lack of respect; the denial of full civil and human rights; the loss of income, the inadequate state benefits, the poverty (while we provide the raw material for a multi-billion dollar industry of the "able-bodied"); the badly designed buildings and transport systems; the avoidance, the social awkwardness, the patronising attitudes, the turning away; the stereotyping; the people who try to take advantage of you and control you; the people who regard you as lazy; the people who think that you could get "better" if only you tried harder; the people who think that your life is less valuable, or indeed valueless; the people and institutions who write you off for no reason, often even before giving you a chance; the systems which say that your life should be open to inspection, classification and judgement; the religious who believe that you have sinned in the eyes of their gods; the rejection, the isolation, the institutionalisation . . . the lack of positive images. And the labelling of our anger at these and other injustices as unjustified, undesirable, sick, mad . . . and the condemnation, drugging, restraint and imprisonment that results when we protest.
Realising that disabled women are excluded from both the women's movement and the disabled people's movement, with the result that disabled women's issues are excluded and invisible. For example, we suffer from the highest level of domestic violence, yet most refuges are inaccessible to us, and national and local government policies on domestic violence ignore us. Equally, our lack of access to health care services such as breast cancer screening is never raised as an issue. The non-disabled women's movement also tends to infantilise us as objects of care, never recognising that many of us are also looking after children or relatives, yet we have great difficulty in accessing everything from nursery schools to support services.
Realising that the embodiment of disability challenges and undermines our belief in the omnipotence of science and medicine, the fundamental belief-system of twentieth-century Western culture, and reminds us that we are all mortal and will suffer before we die. And that the embodiment of disability also makes explicit what is true of all of us to a greater or lesser extent: that there is no such thing as "normal"; that our bodies are really asymmetrical; that our physical abilities vary over time and according to our environment and our external dressings and aids - as well as being affected by our fears; that, physically and mentally, all of us have our vulnerabilities, fragilities and strengths; that the border between sanity and insanity cannot be drawn; that we all suffer from physical and emotional pain at times; that all intelligence and ability to learn is on a continuum; that no one can live without physical and emotional support at times; that we are all unique . . . that the division of people into normal/abnormal, perfect/imperfect, incompetent/intelligent, sick/well, mad/sane, disabled/able-bodied is in fact without meaning. To label us as Other, to oppress us, and, where possible, to exterminate us before or shortly after birth, are all acts of denial which are ultimately as pointless as trying to stop the tide from coming in or the day from turning into night.
Gaining Pride, a gift beyond price from those who have travelled this path before me; and learning to love myself. Regaining my self-respect and self-esteem, and the belief that I have the right to be treated with respect, to live without abuse, to participate fully in society and to have full civil rights. And realising that disability doesn't diminish your sexuality or your wholeness as a sexual being, and so you shouldn't feel lucky or grateful to have a lover just because you're disabled.
Trying to be out ethnically, sexually, mentally and physically; in the knowledge that it is more difficult to be frank about the nature of my impairment than anything else; and while being clear that I have several identities, all of which are important, and none of which define me.
Realising that Alice Walker is right: "Resistance is the secret of joy."
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|Dr Ju Gosling aka ju90's ABNORMAL: How Britain became body dysphoric and the key to a cure is available now for just £3.09 for the Kindle or in a limited-edition hardback with full-colour art plates for £20 inc UK postage and packing.|