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The Secret Carer
Features Writer
9:06 AM 1st July 2020
Opinion

Disability Discrimination - A Matter Of Life And Death

A shocking report was released this week spelling out the scale of deaths of people with disabilities from Covid-19 in the UK: 22,500 in less than three months, from 38,000 in total. In other words, around 60% of deaths in that time were of disabled people. And, in fact, the Office for National Statistics, which produced these figures, regards this number as an underestimate.

This report completely crushed me, both in terms of the sheer numbers involved but also at the thought of these people dying alone, terrified and, in many cases, unaware of what was happening to them. It breaks my heart.

The full report can be found here.

I say that I was shocked by the report. At the same time, I was not surprised. Too often the lives of the disabled are written off, held to be of less value than the lives of others. No doubt the same sinister phrase will be wheeled out, that they all had “underlying health conditions”. This is dishonest. Having a disability does not necessarily limit life expectancy; and many disabilities are completely unrelated to the respiratory effects of Covid. There is no doubt that many of those who have died could have expected to live many valuable and fulfilling years.

I am sorry to say that those of us who care for disabled relatives know all too well the discrimination that we encounter on a regular basis, even from medical professionals. I believe – and hope – that most of the time this is unconscious. But it can feel like it is systemic.

Speech and language therapy

As one example, my son was unable to talk until the age of six. He desperately needed speech and language therapy (SALT) before this, to help him communicate in other ways; and after, to help with developing and improving his speech sounds. For year after year, it was a battle to secure the help he needed. But there were always other children who they thought would benefit more.

At one point, before he could talk, he was given an electronic communication device to help him ask for things; two weeks later the SALT service told us we had to give it back as there was another child they wanted to give it to instead. One of the most important human rights is to have a voice, and this was denied my son.

Ophthalmology

At the age of six, my son developed a squint; that is, one of his eyes kept deviating towards one corner, when the other was looking straight. He was referred to the ophthalmologist, who examined him and confirmed the diagnosis but could not suggest a cause, other than lots of “children like this” have this sort of problem. He did not clarify what he meant by this, but I assume he was lumping all disabled children together as some sort of homogenous group. I asked what the options were for treating the problem and he responded by asking why we would want to do anything about it since our son was disabled – “What can you expect?” It was as though we should simply accept it, and that there was no point trying to improve the life or the appearance of a disabled child.

Education

But it is not only in the medical sphere that these little discriminations take place.

During my son’s last year in a mainstream primary school, the class was due to go on a four day outward bound field trip. We waited for the introductory letter telling us more about the trip: its cost, dates and so on, but time went on and nothing appeared. One day, talking to another mother at the school gates, I casually mentioned how long it was taking to send out the documentation. Surprised, she replied that the school had sent out details several weeks previously. My son had been deliberately omitted. No-one had spoken to us about it. I was devastated by this.

Having requested a meeting, we were told that they hadn’t sent us the paperwork because he couldn’t do the activities, and so there was no reason he should come along.

This was as clear a breach of the Equality Act as you are likely to come across. We did not choose to go down the legal route but, needless to say, we made damn sure he did go on the trip. He had a fantastic time and exceeded all expectations: we have some lovely pictures of him canoeing, body boarding, beck scrambling and rock climbing. Even if he hadn’t achieved these things, the actual experience of being there would have been a positive for him. Instead he had been pre-judged and was being constrained by other people’s preconceptions of him. That is – literally – prejudice.

Photo by Fusion Web Animation
Photo by Fusion Web Animation
Coronavirus

All of the above examples, in themselves, are of different levels of severity and significance. They may be relatively minor, merely causing difficulty, distress, or delays. But now imagine those lesser discriminations being scaled up in the face of a major external problem. That is what has happened with the Covid-19 pandemic. Doctors and other health professionals are suddenly expected to make judgements on levels of treatment; and the discrimination literally becomes a matter of life and death.

Instead of a communication aid being taken away from a disabled person, it is now a ventilator.

Instead of a disabled person’s appearance being valued less, it is now their life.

Instead of a learning disability being the reason for omitting a disabled child from a school trip, it is now the reason for a Do Not Resuscitate order.

This is not hypothetical: at the start of the pandemic in the UK, the National Institute for Health and Care Excellence (NICE) gave out advice to deny disabled people treatment. NICE was forced to retract the advice after threats of legal action.

And there are reports of disabled people having Do Not Resuscitate (DNR) orders added to their medical notes, indicating that there was no effort to be made in saving their lives if they were seriously afflicted by the Coronavirus. Turning Point, a learning disability care provider, raised the problem in April, saying it had received multiple unlawful DNR orders from hospital specialists and GPS that month, despite the National Medical Director, Professor Stephen Powis, sending a letter to all primary care trusts specifically stating that learning disabilities “should never be a reason” for a DNR order: “Learning disabilities are not fatal conditions.” I find it extraordinary that this even needed to be said.

The British Medical Association, meanwhile, set out guidelines to ration care, including taking disabled people off ventilators in favour of ‘healthier’ people.

Learning disabilities and autism were among the conditions that were listed as grounds for removing or denying care; yet these conditions are not ones that should have any relevance where Covid is concerned. It is dishonest and disquieting that these are viewed as “underlying health conditions” and therefore treated as though an early death was inevitable. As the ophthalmologist said about my son, “What can you expect?”

Well, what I expect is more. Someone with a disability is no more or less valuable than any other member of society. As Frances Ryan wrote, “Disabled people, like all minorities, are only fully human when we are permitted to be as wonderfully average as anyone else.”

Yet look at those statistics again: almost two-thirds the Covid deaths in this country are of the disabled. What starts with a little, unconscious discrimination can lead, ultimately, to a wholesale loss of life at a monstrous scale. We should all be outraged.