Cure or accommodate? It’s not an either-or
Yesterday I saw an advert for a free public lecture at the University of Melbourne (won’t be going; bit too far for me to travel) on the subject “Persons with Disabilities: Cure or Accommodate?” (HT: Carly Findlay). Part of the advertising blurb for the event reads:
“Where should scarce governmental resources be channelled: to improving function and finding cures or making reasonable adjustments to ensure persons with disabilities can effectively and fully participate in society?”
It then says that “it is the voices of people with disabilities themselves that must guide this debate” and three of the speakers have a disability (blindness in two cases, deafness in one); the other two are an audiologist, who runs an institution that fits cochlear implants, and a psychiatrist. Including a panel member with another type of impairment — say, a wheelchair user, or someone with a chronic illness — would make the panel rather more representative of the disabled community.
I’m not familiar with the Australian disability scene beyond a few big names (e.g. Stella Young) or with the five speakers named, so this event could prove to be very positive. However, the synopsis reflects some quite disturbing attitudes towards the matter of disability accommodation. One is that it’s about how to spend “scarce” resources; i.e. if you want accommodations, you will be spending other people’s money or depriving someone else of something. Living in the UK, I remember how the previous government justified cutting benefits and social care that allowed disabled people mobility and dignity (as well as a host of other public services, such as libraries) on the grounds that “the cupboard was bare” after the 2008 crash and the Labour government’s bailouts, yet when it came to repairing damage caused by the 2013/14 floods in parts of the country that had voted for the two coalition parties — when “the effluent hit the affluent” as commentators put it at the time — David Cameron suddenly boasted that “we’re a rich country; we can afford it”. Resources often aren’t as scarce as is made out, and the root of the scarcity is often people’s reluctance to pay their taxes.
The other is that “cure or accommodation” is an either-or, or a choice at all in most cases. For the vast majority of disabled people, it is not a choice; there simply is no ‘cure’, although this term is not even accurate as they are not ill. It has proven that much easier to find ways of eliminating pathogens or growths that cause loss of life or ongoing sickness than to repair or replace body parts that are damaged or missing. The cochlear implant is one important success story, but it cannot remedy all forms of deafness. Bionic eyes (the blind woman on the Melbourne panel has one) are in an early stage of development, but even they would not be able to remedy blindness which is neurological. Corneas can be transplanted, but they can also be rejected. It’s possible, in some cases, to implant electrodes into the spinal cord to allow a paraplegic to stand up, but that’s only a small return of function. Research into a cure for spinal cord injury progresses slowly, and seems to have modest goals in terms of what function it can restore, especially to someone with a high-level injury. The majority of impairments just have to be lived with.
On top of this, not all disabled people want to be cured, or should be expected to take whatever ‘cure’ is presented to them. Some deaf people cannot adjust to a cochlear implant; some blind people have forgotten what seeing is like, what colours and people look like (and may not know, for example, what their spouse looks like). They may have tried an operation to remedy their impairment in the past, perhaps more than once, and found that it failed, and do not want to go through it all again with the risk of having to re-adjust to, say, being blind all over again. The ‘cure’ may well be surgical, requiring a lengthy recovery (and the risks inherent in general anaesthetic), and cause an enormous amount of pain. It may have side effects that are worse than the condition they were meant to remedy. And some purported cures are not cures at all, but ineffective or harmful potions peddled by quacks and con men (bleach and anti-androgens for autism spring to mind). It’s not fair to expect anyone to submit themselves to pain and risk so as to save others some degree of expense, or hassle, or being disturbed by looking at them.
So, the question of “cure or accommodate” does not really arise. If you are called upon to accommodate someone who is disabled by providing some sort of assistive technology, or a modification to a building, or perhaps a member of staff to interpret or otherwise assist someone, or to educate your staff so as to change their behaviour or attitudes regarding disability, you are almost certainly not in a position to cure their impairment. The choice is between accommodation and exclusion. The resources that might be used for this are a fraction of the cost of research into cures, which requires manpower (and highly-paid manpower at that), laboratory time, tests, the upkeep of all the buildings used, and so on, over a period of years, during which many people might have lost out on education or on employment opportunities, or may have spent the time confined in an institution because someone preferred “researching a cure” to facilitating them having a life in the community, and the research might not bear fruit anyway. Research also attracts private funding from trusts and individuals, so it need not take away resources that could be used to benefit disabled people now. Between certain gain in the short, medium and long terms and uncertain long-term gain (accompanied by certain losses for those affected), if it’s really a competition for resources, there’s just no contest.
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- A tax on progress
- Putting the NHS on a pedestal
- Coronavirus: panic buying and the dangers to disabled people