Gilderdale, Schiavo and models of disability

The other day I had a debate with Clair Lewis, a British disability activist and blogger, about the public reaction to the Kay Gilderdale case. Lewis was appalled by the show of public sympathy towards Kay and the way she was let off the hook after what she regarded as a 30-hour assault on her daughter, Lynn, after she discovered that she had taken what was intended to be a fatal morphine overdose. The Tory MP Ann Winterton had entered an early day motion in Parliament condemning the “pro-euthanasia bias” of the BBC, who broadcast the Panorama programme which was highly sympathetic to Kay Gilderdale, but also Terry Pratchett’s pro-euthanasia lecture (Pratchett has been diagnosed with Alzheimer’s). At the time of writing, only ten MPs had supported her motion. (Lewis has since written another article on the Inglis and Gilderdale cases.)

For my overseas readers who don’t know who this Gilderdale person is, Kay Gilderdale is the mother of Lynn Gilderdale, who suffered from myalgic encephalomyelitis (ME) for seventeen years, starting from the age of 14, believed to have been triggered by the BCG vaccination (against TB) or a reaction to it. She immediately felt unwell, was unable to go to school from two days after, and her health declined until, a few months afterwards, she was almost completely paralysed, bedridden, mentally confused and unable to remember things, and unable to speak or swallow. While she regained partial use of her arms and her mental faculties were somewhat restored in the years that followed, she remained bedridden and her other limitations remained. She was also in severe pain (controlled by morphine), unable to sit up as she would pass out, continually nauseous, and unable to tolerate light, sound or even a person’s company for more than a few minutes per day. She thus spent most of her days between the ages of 14 and 31 alone, in the dark, in pain.

I didn’t watch Pratchett’s lecture, but I did watch the Panorama as I wrote in an earlier entry. I thought it was somewhat sentimental and that there was not enough investigation; the question of why people like Lynn had been able to get that ill in the first place, hardly registered, but I also believed that the sympathy for the Gilderdales was genuine and was not simply a matter of people thinking Lynn’s life wasn’t worth saving because she was “disabled”. While the ME community and Lynn’s friends were all sad that she had died, they all supported Kay and none of them believed she should have gone to prison or even be put on trial. The sentence she got was consistent with sentences for assisted suicides in these circumstances over the past 20 years or so (not all have even been brought to trial); perhaps Kay would have been much more reluctant to do so had she anticipated a stiffer sentence, and perhaps if she had been able to say “I could get ten years for this”, her daughter would not have expected her to help.

Lewis responded:

Again, it shows that the state regards the lives of disabled and non disabled as being of different value. Oh and apparently the ME community agrees. Sadly, but, unsurprisingly, we’re seeing a split here between people focussed on their impairments / own navels and people focussed on activism / social model / the world and how we form a part of it or not and equality. Shameful but unsurprising.

She also said that she had had mutual friends with Lynn and that she had been contacted by some of them who were “shocked and disgusted at the state, the public and ME community’s response”. However, the ME community are not known to have had a position on euthanasia before now; their position was one of solidarity with one family who had been part of their community for years and which they knew was in a very extreme situation and had been for years. The state’s and health service’s failure to provide Lynn with the medical and social care she needed, leaving Kay to act as almost sole carer for 16 years, is not in dispute. By all accounts (including Lynn’s own), her parents had tried everything to dissuade her from wanting to die, to no avail. Perhaps her friends online tried to do the same; I don’t know. We do know that nobody, except Lynn, wanted Lynn to die and if Kay’s version of events is to be believed, she tried to stall Lynn when she tried to do it. Lewis told me that the normal parental response” would have been to call an ambulance, which is “what would have been expected if Lynn had not been a disabled woman”, and that my attitude amounted to letting the state off the hook.

However, calling Lynn “disabled” does not even begin to describe her condition. She was not a paraplegic who had attempted suicide in response to an emotional upset such as a relationship breaking down, or because she was unable to come to terms with being paralysed, like Daniel James; in fact, she had coped with being paralysed for several years. Her desire to “not be on this planet any more” was something that both her parents and her friends online were well aware of. She had attempted suicide at least once before and had entered a “do not resucitate” note in her medical files. A “normal parental response” is something you expect from a normal parent, not from someone who had dedicated more than sixteen years of her life to caring for such a severely ill daughter with very little help. The lack of outside care is striking; a person of Lynn’s age with quadriplegia on its own would be able to live on her own with round-the-clock care and personal assistance.

As for why she did not call the ambulance, the likely reason is that Lynn hated and feared hospitals. I was recently in contact with someone who was a close friend of Lynn’s, who I will call Maggie, and she told me that Lynn had been through a lot of traumatic experiences and escalations in her illness in hospital: they were where she was subjected to forced exercise “therapy” (this actually makes ME worse), where she was left to wet herself because the staff believed she was really capable of getting up to use the toilet, where she was repeatedly accused of faking her illness, where doctors tried to induce her to tell them she had been abused at home, where she nearly died when an operation to replace a Hickman line went wrong (after doctors ignored her when she said she could not breathe), where she suffered a fractured spine while being turned (she had severe osteoporosis), where she was awake during an operation to change a feeding line (or PEG) and a drug that was meant to wipe her memory of it failed, and where a doctor had raped her. The last place she wanted to be, and least of all to die, was in hospital; the place she felt safe was at home. She had lost hope of making a meaningful recovery, and the knowledge that she could not have children was particularly distressing to her. She did not expect anything else from life except more pain, sickness and medical abuse, and the normal things which bring comfort to someone in distress, such as physical contact, made her ill; she could tolerate even her mother’s presence for only a few minutes at a time. She also feared becoming brain-damaged and having to move into a nursing home.

It would not be the first time that disability activists had claimed as one of their own someone with impairments far more profound than theirs. Joni and Friends, a TV show hosted by Joni Eareckson Tada, a quadriplegic mouth-painter who became some kind of evangelical speaker with a focus on disability (Joni is pronounced Johnny, but she is female), did a two-part episode (part 1, part 2) on the case of Terri Schiavo, who was the focus of a court battle between her natural family, who wanted to take her home and care for her and insisted that, although brain damaged, she was still able to recognise them and minimally respond, and her husband, who wanted to withdraw her feeding because she was in a “persistent vegetative state”. Eventually, his case prevailed and she died in March 2005. On the JFTV show, the family alleged that after her injury, he worked together with them and put her through rehab programmes which had some effect, including some development of speech, but that after winning a malpractice suit against his wife’s doctors, he stopped her therapies and initiated proceedings to remove her life support.

It became difficult to work out who was telling the truth during that case, and after it an autopsy found that her brain had half the expected weight, with extensive damage to all regions of the brain consistent with a persistent vegetative state following cardiac arrest. The family’s attorney, Patricia Anderson, claimed (just over halfway through the video) that while Terri was normally still, she “lit up like a Christmas tree” every time she became aware of her mother’s presence “and began vocalising”. However, the videos replayed in this programme show that to be something of an exaggeration, although she did appear aware and seemed to be enjoying the attention.

The important bit of this programme, for the purposes of this essay, comes around the 75-80% mark and features George Felos, Terri’s husband’s attorney, and Joni Tada herself:

Felos: If you sat down with most people — at least, I believe — and said, “look, if you were in a situation where basically your brain was gone, was destroyed, and you would have no consciousness, no awareness, would you want your physical body to be sustained indefinitely through a feeding tube, through a respirator, through medical treatment?”, I would say that the overwhelming majority of people would answer “no”.

Tada: I am offended by that. I find that objectionable. Because if you are looking at Terri, you are looking at me, and nobody, certainly not me, wants to be disabled. But once you experience that accident, once you are disabled, you would be amazed at how quickly you change your mind. Life is that precious. I mean, watching those videos, Terri was connecting with her family. You saw it. She may not have been able to tell them, but her smile revealed joy just being with Mom and Dad and brother and sister, and that is what the courts refused to acknowledge: Terri’s right, Terri’s God-given natural desire to live.

The problem is that you are no more looking at Joni Tada when you look at Terri Schiavo than when you look at Lynn Gilderdale. They are, or were, three very different women with totally different impairments. Joni Tada’s disability is purely physical. Terri Schiavo was terribly brain-damaged while Lynn Gilderdale had a disease which causes crushing mental and physical debility, paralysis and pain. While I do not actually think it is acceptable to turn off the feeding of a brain-damaged adult who acquired the damage as an adult any more than of one who acquired it in a birth injury, for example, whatever judgement might be made on Terri Schiavo’s quality of life has no bearing on Joni Tada because the latter is not even mildly brain-damaged. Their disabilities are simply not comparable.

Returning to Clair Lewis, she suggested that the reason behind the ME community’s support for Kay Gilderdale was because they were “focussed on their impairments / own navels” rather than on “activism / social model / the world and how we form a part of it or not and equality”. The “social model” of disability she is referring to essentially stipulates that a person with a physical disability is unable to participate in society because society puts barriers in their way which it has the duty to remove as much as possible, while the “medical model” holds that the disabled person’s impairments are themselves the reason why the affected person cannot participate. The problem is that, when you have a condition like ME, the social model shows its limitations, because it is difficult to participate in society at all when you have to live lying down in a darkened room, and cannot tolerate light, sound or human company for more than a few minutes at a time. As it happens, Lynn Gilderdale participated as much as she could by communicating with, and giving a lot of personal support to, people in similar situations to hers and to others (among them, a ventilator-dependent quadriplegic woman with a terminal mitochondrial disorder, who eventually died around the same time as Lynn, albeit from natural causes). Maggie told me that she continued doing this until the end, making efforts to cheer others up, albeit through briefer messages towards the end. Her family participated in efforts to raise awareness of ME, which included having Lynn’s picture on the masthead of the 25% ME Group website. While I do not doubt that there are those with ME in the disability movement, the activism potential of those severely affected is fairly limited.

I believe that the disability movement’s opposition to legalising assisted suicide and euthanasia is the correct position to take, not only because of the sanctity-of-life considerations you might expect from someone with a religious commitment, but also because it has the potential to put disabled and elderly people in a very difficult position. In the recent past, even in countries like the UK, the USA and Australia, to say nothing of Europe, there have been atrocities committed against people, particularly children, with disabilities, including shutting them in “homes” and “schools” in which they were neglected for years, sterilisation, official “euthanasia” programmes, selective abortions for even trivial impairments, and the suchlike; the fear is very real and justifiable. However, I do not believe these do their cause any favours by seizing on extreme cases such as this one which involve people who are not merely disabled but incessantly and miserably ill over a long period, and treating these incidents as if they were a threat to disabled people generally. Lynn Gilderdale did not kill herself because she was disabled; Maggie told me that her own greatest goal at present was to be able to use a wheelchair (she is currently bedridden). Lynn took the action she did because she was, as her friend put it, “soul-weary” after years and years of pain, loneliness and enforced inactivity — a similar lethal combination to that which had almost pushed Hilary Lister to a similar course of action five years earlier ([1], [2]) — compounded with abuse, recurrent medical disasters and very restricted opportunities to talk about her traumatic experiences with anyone or receive physical comfort. That people rallied around her mother is no reflection on their attitudes to disabled people, and whatever anger is being directed at Kay would be better aimed at the doctors who caused her condition to get to the point it did in the first place, and channeled into making sure they, and their attitudes, cannot destroy someone’s life this way again.

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