Bionics: The right to choice and having a voice

Bionics: The right to choice and having a voice

In the final part of his series on disability and technological enhancement, Mik Scarlet ponders the dilemmas faced by those who opt for bionic solutions.

The first ball of the 2014 World Cup was kicked not by a world-famous footballer or celebrity but by 29-year-old paraplegic Juliano Pinto, wearing an experimental thought-controlled exoskeleton built by Brazilian team led by Dr Miguel Nicolelis. The team released a statement that claimed this was “just the beginning” and that they saw a future in which “people with paralysis may abandon the wheelchair and literally walk again”. With such advancements coming online so rapidly, it is vital that those of us who could be said to “benefit” from them explore what we think of the concept of fixing us using technology.

I thought I might get an insight into what it actually means to be cybernetically enhanced from Deaf actress and writer Emily Howlett, who herself has a cochlear implant (CI) to gain her thoughts on her implant and how it impacts on what it is to be deaf.

“Cochlear implants are hugely divisive in the deaf community, and it causes all sorts of issues and upset that genuinely do not need to exist. I don’t mean the questions of whether to implant young children who aren’t able to make the decision themselves; I mean the political junk like ‘If you have a CI you have betrayed your Deaf identity and we cannot, as a community, accept you’. That is beyond ridiculous, but it also highlights the perceived difference between a cybernetic enhancement and an ‘aid’; it’s almost as if by having something surgically attached you become ‘other’, whereas if you have something which helps you but is separate, like a prosthetic limb or hearing aid, somehow that means you are still ‘you’.

“Personally, I made a complete U-turn with regards my own implantation, and I would strongly defend anybody’s right to do so. Our lives and outlooks are not set in stone for our entire lives; they are fluid and change as we learn more about the world and ourselves, and experience new things. Sometimes a decline in condition or health might be enough to trigger a change in attitude, or it might be a different circumstance, e.g. for me it was my new baby and the threat of losing my sight. It still terrified me to have the operation, and all my doubts were still there, but the potential benefit suddenly outweighed all the negatives. Before having my implant, I wrote about not wanting a CI and I was totally lambasted by people who couldn’t understand why someone wouldn’t take the opportunity to be ‘fixed’, even though there was a high risk of failure, infection, death and no guaranteed benefit.”

Questions of identity

The whole subject still concerns Emily though: “Some people are at war with their disability and will want to be ‘fixed’. That’s just a fact. But it’s not really the individual that matters here; it’s the view of society as a whole. If individual disabled people saying, ‘Hey, I want to try and improve my situation’ opens a floodgate for the non-disabled general viewpoint to be ‘They all want to be fixed, because they know they’re broken!’ That’s what we would need to watch out for.

“Of course, I am who I am because I am Deaf, but would being hearing change me fundamentally? If I had grown up hearing, I’d probably be very different, and had different experiences. But if I could become hearing now, would that change me, or am I set enough as a person that it wouldn’t affect my core self? Then again, if I am happy with who I am now, why would I need to hear better? It’s such a conundrum. I honestly couldn’t say if I would consider such a thing and how it would make me feel, because it’s just so vast.”

So far I have explored the subject from the viewpoint of people who have been disabled since birth, but what about those disabled people who become disabled later in life, which accounts for around 80% of the disabled community.

I met wheelchair user Jason Miller as he learned to use the Re-Walk exoskeleton.

“I think it really helps me as I can still remember what it feels like to be stood up. I had my accident last October, so standing up again feels really great. It’s so good to be able to look people in the eye again. I haven’t been happy with sitting down, and I want to be able to move while standing.”

As he walked round the room the joy of being back on his legs was obvious to see, as well as the sheer concentration involved in using the technology:

“I might have a while to go before I master the Re-Walk, but then I haven’t really learned to use my wheelchair yet either.”

I lost the ability to walk at the age of 15 and so could identify with Jason. I know how the grief of losing your past ability, and the future you thought you had ahead of you, can be crushing especially as your only frame of reference are the stereotypes of what it means to be disabled. If at that point surgeons offered the chance of using technology to undo the current position it’s open to question how many people would say no. No matter how far the state of equality for disabled people marches forward, medicine will strive to fix impairments and conditions and people will want to be healed.

When I started out researching this subject I was very much of the belief that cybernetic technology can only damage what it means to be disabled. While I still firmly support the Social Model and will fight for a fully inclusive society to my dying breath, my position on disability and the use of cybernetics has shifted. I have moved from really seeing it as a threat to disabled people to a possible useful new tool. However I am still worried that the drive to advance this technology may lead society to maintain the attitude towards disabled people that we all need, want and must be fixed. I very much doubt that we will ever reach a point where technology will be able to undo all types of impairment, so this attitude may lead to a place where if we can’t be normalised we may be done away with. The growth of the pro-assisted suicide/euthanasia lobby worldwide already indicates that this mentality is gaining ground. A possible unintended outcome of creating a world where bionics can repair many impairments is the reinforcement of the belief that anyone who cannot be helped by cybernetics has a poor quality of life, and so would be better off dead. Melodramatic maybe and I know that everyone I have spoken to who is involved in pushing the boundaries of cybernetic technology would shudder at the possibility, but they also have little understanding of attitudes that disabled people experience every day.

If disabled people want to ensure that we are happy with the direction of bionic technology we must discuss our views with each other and then ensure our views are heard by the scientists and by wider society. Only then will tomorrow’s world be one we will be happy to live in.

2 thoughts on “Bionics: The right to choice and having a voice

  1. If I had the choice of being disabled or being able-bodied I would choose the latter. If technology became available like in the film Avatar where we could remotely control a different body with our minds, at least for a short while, I would love to try it. I wouldn’t want to have abilities greater than “normal”, but if we could control standard human or robotic avatars, I think it would be great.

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  2. This was a great article on the social aspects of technological medicine. For me it really highlighted that all aspects of society have trouble accepting those with different valid opinions to their own.

    Your paragraph suggesting that the increase in support for assisted suicide is related to and intrinsically liked to decrease in acceptance of disability is a massive leap though and one I just can’t believe.

    Although I’m sure there are a minority that would support assisted suicide for amputees and other such disabilities but I think the majority of support comes from those who have watched and helped loved ones through long and painful deaths and would have preferred said loved ones to have been spared the suffering they feared and endured.

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