Friday, 20 March 2015

The Great Cure Debate

As I said in my last post, this started out as a tangent and evolved into it's own thing. It's something I started thinking about because a lot of awareness campaigns base themselves around the idea of the need for a cure, yet many proponents of the social model believe that cure isn't necessary, and that most of the problems that come with being disabled would be solved if disabled people had full equality.

This issue is one that has potential to create huge divisions within the disabled community, but I don't believe it has to be this way. I think it is possible to make room for both, even though the two ideas seem to be in direct conflict with each other. In this post I will be exploring the debate, and I'll also be examining my own thoughts and feelings about the ideas of cure and equality for disabled people.

There are 3 main arguments that are usually used to justify the desire for a cure. Firstly, that disabled people are unhappy with their lives, and would be happier if they were non-disabled. Secondly, that disabled people suffer terribly as a result of their impairment. Thirdly, that disabled people are a drain or burden on society.

The first 2 arguments are commonly cited not just by non disabled people, but by disabled people themselves, although usually only if their impairment is acquired. I have noticed that most people I have come across who were born disabled do not desire a cure. The third argument is most often cited by non-disabled people, and I don't think I would be the first person to say that it is deeply offensive to most of us disabled people.

The arguments against cure are firstly that disabled people are not unhappy and also not necessarily  suffering. Secondly, that any unhappiness or suffering are generally a result of their experience of inequality (e.g. lack of access, workplace discrimination, hate crime). Thirdly, that disabled people are not a drain on society, and equality would give them even more opportunity to contribute (e.g. an end to discrimination would see more disabled people in work, better access would see disabled people able to fully participate in politics, culture and the arts).

As you can probably now see, it is easy to think that it's a case of cure vs equality. That's what it seemed like to me when I first started reading about it, especially since disabled people themselves seem to fall into either one of two camps.

In the first, are those who do not desire a cure. They either see their impairment as a blessing, are able to live happily with it, or don't feel any kind of loss because they were born with their impairment. In the second, are those who desire a cure because they feel they are suffering as a direct result of their impairment, those who see others suffering as a result of the same impairment, and those who feel they should want a cure due to pressure from wider society making them feel as if they are a burden. Those who suffer may hold onto the hope for a cure and this might help them cope emotionally with the impact of their impairment.

Since starting to read disability blogs, I have constantly been challenged by the idea that disability doesn't need to be cured, and that our lives could be vastly improved simply with equality.  As a disabled person whose impairment is caused by illness, the idea of not needing a cure can be a really difficult concept to handle. But oddly, it matches up with my lived experience. I have learnt that I can live a fulfilling life anyway, and it largely doesn't matter that I now live in an impaired body.

Yet, I remain personally conflicted. I am uncomfortable with the last sentence of the above paragraph, because I know many would see me as a traitor to the ME and wider chronic illness community.  But I also feel uncomfortable saying that if a cure became available tomorrow, I'd accept it. Saying I would accept a cure makes me feel like a traitor to the wider disabled community, who are desperate for non-disabled people to understand that a lot of the suffering disabled people experience is as a result of living in a society which does not give us equal rights. Not, as many non-disabled people assume, as a direct result of the impairment we live with. To a certain extent I identify with both sides, and this post is partly a result of my attempt to try and reconcile my personal feelings on the matter.

I am painfully aware that, especially amongst the ME and chronic illness community, there are those who would argue that there is a difference between being sick and disabled, and being well and disabled. Having read a little about lots of different impairments, I would say that in the case of the cure debate, there is little point in making this distinction.

Spinal injury is an example of an impairment that was compared to ME during a Facebook discussion I saw. The person with ME was saying that spinal cord injury (SCI) is not as 'bad' as ME because people with SCI can still do lots of stuff that people with ME can't. But people with SCI can experience debilitating pain, just like people with ME. There are also people with spinal injuries who feel they are suffering and wish to be cured.  Equally, there are probably people living happily and pain-free with an SCI, and there are people like me, who are living well and positively with chronic illness. There are people on both sides of the debate, no matter what their impairment is.

The other thing is that people with SCI face probably as many barriers to participation in society as some people with ME. Whilst someone with SCI can stay up all day without resting, and spend as much time as they want out and about, there are far more places they cannot go than someone like me who is able to get out of her wheelchair and walk a bit, yet cannot go out much more than twice a week. To say that one impairment is worse than another creates needless division, and means that people do not recognise one another's suffering, whether it is caused directly by impairment or as a result of inequality. The reality is that the majority of disabled people experience both social exclusion and problems related directly to their impairment.

Many people in the chronic illness world desire a cure, whereas many disabled people with other impairments (especially those who were born with their impairment), do not. Interestingly though, there are chronically ill people who identify much more with the wider disabled community in terms of recognising and challenging disablism. There are always exception to the rules we create, always people who will inhabit a space outside the box we would like them to fit into. The disability community is diverse, and we all have different ideas about what is good for us. But I think we could unite around the common cause of equality, if we could but see how it would benefit everyone, whether they desire a cure or not.

When it comes to equality, it actually matters very little what impairment a person has, or what they think of their situation. Equality could benefit any disabled person. The main reason that I am able to have a fulfilling life is that I have a few things available to me that other disabled people do not always have. Support and loyalty from family and friends; access to equipment such as my wheelchair; availability of information to help me manage my condition; peer support from the internet; wheelchair access to essential places like my GP surgery and pharmacy; wheelchair access to leisure activities; disability benefits. My point here is that all these things are factors external to my condition. To me, they have essentially solved a large number of the problems caused by my illness. I believe that in a large number of cases, the suffering people experience could be at least partially alleviated by external support, rather than needing a cure. Equality would mean that all disabled people would have access to the things they need to live as fulfilling life as possible with their impairment.

Equality wouldn't just include better wheelchair access or improved attitudes, but access to treatments such as pain relief, operations and appropriate medical advice, that alleviate those aspects of impairments that have a direct impact on quality of life. Believe it or not, many disabled people do not have access to all the medical care and management advice that would maximise their quality of life, and this could be considered disablist.

The stigma that surrounds many conditions means that some people don't seek help at all. They become disabled by not having access to medical advice, treatments, aids and adaptations that could improve their lives. Removing this stigma is about changing attitudes, not finding a cure for the impairment.

Another reason for prioritising equality, in my opinion, is that it is actually more achievable than cure, at least in a practical sense. Even with huge amounts of research, many conditions, not just ME, are still incurable. In this lecture, Michael Oliver gives the example of The Spinal Injuries Association, who, in 1986, claimed that a cure would be possible in just 5 years, if they could raise enough money. Almost 30 years on, there still isn't a cure for spinal injuries. Only very recent research findings have produced 2 examples of the possibilities of curing spinal injury (see here and here).

In contrast, external solutions have been developed far more quickly, in the form of better wheelchairs and even powered exoskeletons. Generally speaking, developments in assistive technology and improvements to equipment, aids and adaptations appear to have moved far more quickly than the search for a cure. They are also more generic (like touch screen or 'smart home' technology), meaning the same piece of equipment could help people with several different impairments. Cures would almost always need to be impairment-specific.

I'm not suggesting that the search for a cure should not continue. Research is not just about cure. Research helps doctors and patients to understand and manage conditions effectively. It can help to ensure correct diagnosis and develop treatments to relieve symptoms. I believe that these things are also crucial for good quality of life, and that not providing them when they exist (or could realistically exist) is a form of disablism.

Equally though, wheelchairs exist, assistive technology exists, pain relief exists; right now. They just need to be made available to all those who could benefit from them. Research being done now may only benefit people in 10, 20 or 30 years' time but I believe passionately that people's lives could be better now.

Medical advances are keeping more disabled people alive. Therefore those same medics and scientists have a responsibility to ensure that the lives they save are as fulfilling and as comfortable as possible.

Finally, I would like to address the argument that cure would negate the need for equality. I believe this line of thinking is profoundly dangerous for humanity. If we were to find cures for impairments, not all cures would come at once. This would leave a smaller and smaller group of disabled people, potentially subject to extra stigma because they cannot be cured at the current time. This would leave them vulnerable to further suffering.

More importantly, prioritising cure sends the message that difference is unacceptable, and compounds the idea that we should all have perfect bodies. It is a fact of life that human beings are diverse. It is a fact of life that no one's body works absolutely perfectly. Everyone has some ailment or other, even if it's just hay fever or an ingrowing toenail.

The other thing is that we wouldn't expect other minority groups to be 'cured' as a 'solution' to their suffering. Just think about it for a second, I'm not going to say any more!

In conclusion, my view is that we shouldn't focus on cure or equality as separate and conflicting aims. This creates a space for working towards all the things that will make life better for all disabled people; removing stigma and prejudice; equal access to public spaces, education, work and healthcare; providing equipment and adaptations that maximise quality of life; as well as pushing for medical research that may produce a cure, but at the very least should result in better medical advice and treatment.

Further reading: The comments on this article make some good points too.