Can anyone speak for all disabled people?

Many years ago, there lived a scholar who asked an old rabbi what could be learned from the Talmud. The rabbi told him of two men who fell down a chimney. One arrived at the bottom dirty, while the other arrived clean. “Is that the lesson of the Talmud?” the scholar asked. “No,” replied the rabbi, “listen to me: the dirty man looked at the clean man and thought himself clean.” “Is that the lesson of the Talmud?” asked the scholar. “No,” replied the rabbi, “for the dirtied man looked at his own hands and on seeing them sooty knew he’d been dirtied.” “This then is the lesson of the Talmud?” asked the scholar. “No,” said the rabbi. “Then what am I to learn from the Talmud?” asked the scholar. The rabbi told him: “You will learn nothing from the Talmud if you start by believing that two men can fall down a chimney and not both be dirtied.”

I read the above many years ago in a book called City of Gold by Len Deighton, a spy novel set in Cairo (Egypt) during World War II. I’m not sure where Deighton himself got it from, but it seems relevant to a discussion on disability and identity which has been running on three blogs I read fairly recently, first at Bad Cripple (guest-posted also at Journeys with Autism), then at Life with a Severely Disabled Child, then back to Bad Cripple again. Peace is a paraplegic who incurred a spinal cord injury from a neurological illness 30 years or so ago; Claire Roy, the author of the second blog, is the mother of a teenage daughter who suffered severe brain damage when she had a stroke at age 6 (she explains how this affects her here). Peace writes the disability is an important part of his identity, that he cannot imagine life without it, never thinks about the possibility of curing his injury and that “such thoughts are for others; people who without question accept that walking is the only means of locomotion”. He also insists that life for people with disabilities such as his is difficult because:

Our physical and social environment are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.

Claire Roy counters that she does, nowadays, identify her daughter in a group of others as “the kid in the chair” because that is her most identifiable characteristic, but does not want it to be part of Sophie’s identity, and she is not even sure how Sophie sees herself because she always refers to herself in the third person. She would certainly fix her daughter’s disability if it were possible, and rejects the idea of her disabilities as gifts:

Who she is, her identity, is, to me, more about her personality, her little quirks and preferences. Her disabilities, on the other hand, stifle her, stifle who she is. She cannot write for long because it will hurt her arm. She cannot express herself because she can’t catch hold of the words. She cannot put together a plan for her life because she is completely dependent on others and can’t even think in those terms.

There is an obvious disconnect between those who speak for two different types of disabilities: the self-advocating physically disabled and high-functioning people with autism and mild learning disabilities on one hand, and the parents and other carers of those with very severe multi-system impairments on the other, and often we find that the former type try to speak for disability in general, and advance their perspectives and needs as those of all disabled people. One also sometimes sees the second group painting doom-laden pictures of how disability (most commonly, autism) steals lives, ruins marriages etc (the infamous “I am Autism” video issued by “Autism Speaks” has been removed and I could find no copy of it, but there are numerous replies to it as well as this parody which is fairly true to the style of the original). What both apparently don’t understand is that neither of their experiences of disability are any less true than the other.

Having a healthy child (or other relative) become a very severely disabled one in the way Sophie did is a loss in many more ways than acquiring a physical disability (let alone having a relative acquire one) is. A person who becomes blind might become a great musician or a religious scholar; a person can lose his hearing and become a distinguished painter; someone might become paralysed and enter a career that they find more fulfilling than the one they had before. Even someone with a severe illness might value the friendships they make with other similarly affected people, but it is hardly likely to make them want to remain ill. However, for someone who has suffered very severe brain damage or developed severe autism, Rett Syndrome or something similar, their family faces the possibility of them never being able to participate in family and social life in the way they do, and never being able to work or start a family of their own. All the dreams and hopes they had for their relative (or the relative might have had before) disappear. In addition, they may well face illnesses which cause more suffering to them (or kill them) because they cannot tell others what is wrong with them. None of these are matters of social stigma or the inaccessibility of buildings or equipment or things that can be overcome with technology. They are physical losses and constraints imposed on the disabled person by their condition. (A friend I discussed this with said that she thought her mother might have seen the onset of her disability — a rare form of muscular dystrophy which started in her late teens — as a pure loss as well, but my friend was intellectually unaffected and was thus recognisably the same person afterwards, albeit more dependant; this is not the same with catastrophic brain injuries like the one suffered by Sophie.)

When commenting on ethical issues involving the severely intellectually impaired, the self-advocates often identify with them on the grounds that they are “disabled” without considering that their disabilities are totally different, and that they personally do not have experience of the other person’s impairment. Last year, I mentioned two examples of this: the British disability activist Clair Lewis (or “Miss Dennis Queen” as she now calls herself) proclaiming that Lynn Gilderdale was a friend of friends of hers and claiming that the sympathy Lynn’s mother received was only because people consider the life of a “disabled” person to be worth less than that of an able-bodied one. The particular circumstances leading up to Lynn’s death were not taken into account, most prominent among them that Lynn had made the decision herself; it was not made for her. Lewis/Queen has not stated openly what her exact condition is, although she has said she experiences pain and requires care from others, but she is certainly able to speak and is not (at least, not always) bedridden. The other was Joni Eareckson Tada, a quadriplegic woman who runs a Christian ministry organisation for disabled people; she said of Terri Schiavo, “when you look at Terri, you are looking at me”, when in fact, the two women’s disabilities are even further apart than Clair Lewis’s and Lynn Gilderdale’s; Tada’s disability, although considerable, is purely physical. (I wrote an earlier article on this problem, with specific reference to these two examples, here.)

We saw it again in the reaction to the “Ashley treatment” affair and the attempt by a British mother, Alison Thorpe, to get a hysterectomy for her 15-year-old daughter Katie. Both “Ashley” and Katie Thorpe have such severe brain damage that they are estimated to have a mental age in months, and their stage of development has stayed the same since they were that age. In the case of “Ashley X”, the treatment was so drastic that both groups (including Bill Peace and Claire Roy) were united against it (it involved not only a hysterectomy, but the removal of her breast buds and a hormone injection that would freeze her growth). It is significant that the medical team involved in that did not entertain the idea of equivalent surgery on a similarly affected boy, even though boys grow to be bigger and heavier than girls. Still, the blog commentary as well as the intervention from Scope, the UK cerebral palsy charity, suggests that they saw no moral difference between performing a hysterectomy on someone who was physically adult but had the mental age of a baby, and doing the same to a fully competent but physically disabled adult like themselves. The people with cerebral palsy that Scope actually hear from (as opposed to from their family and carers) are the competent ones.

One can understand the concerns of the physically disabled adults, because sterilisations and hysterectomies have been performed on perfectly competent people with physical disabilities fairly recently (it was only made illegal, by court order, in 1992 in Australia, after a 14-year-old girl, Annette Kalkman, was given a hysterectomy a year or so before — whether the two events were connected is not clear). One sometimes hears suggestions that some symptoms of some disabilities, such as incontinence or having to use a ventilator, are good enough reasons to let someone die, when many people live very fulfilled lives while affected by them although neither are desirable. The fact remains, however, that procedures which are highly inappropriate when carried out on an unwilling, competent physically disabled person such as Annette Kalkman may well be appropriate for someone with a physical disability in roughly the same category but with profound intellectual disabilities, as long as it is done for clear benefits to the well-being of the person affected, and not merely for the carer’s convenience. In the case of a hysterectomy, it should not be done unless periods have already shown themselves to be a major problem, which they had not, at the time the operation was sought for Katie Thorpe in 2007.

Adults with physical disability, high-functioning or Asperger-type autism, and a few other groups have proven themselves to be excellent advocates for the needs of their own type, but it does not make them the best advocates for those with profound physical and intellectual disabilities. They often hear what is said by the latter’s parents and think they are talking about their own condition: they cannot understand why a parent would be distressed at their child’s disability, and often find it difficult to empathise with those dealing with the onset of disability themselves, for reasons that have nothing to do with social stigma or barriers anyone else places in their way and everything to do with lost sensory experiences and new unpleasant conditions. The two groups will never see the types of disabilities they deal with the same way, because they often do not compare and neither do their consequences for both the person affected and those around them. What’s the lesson of the story of the rabbi and the scholar that I quoted at the start of this article? That we will never get anywhere in discussions between, for example, self-advocating high-functioning autistics and parents of severely austistic children, or physically disabled adults and parents of children like Ashley X and Katie Thorpe, if we start from the plainly wrong principle that all disability is in some way equivalent and that those with one disability are qualified to speak for those with a quite different one. They are not, and both groups need to understand and respect each other’s differences if they are to avoid more ugly misunderstandings.

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• Travesty of justice, travesty of science