A paraplegic man, strapped into a cumbersome exoskeleton, gave the opening kick of the 2014 FIFA World Cup Brazil. The media, and people, hail this as a miracle of technology, a better future for folks who are paralysed. I see this completely differently. It is both "inspiration porn" and devaluating the experience of disability. Frankly, it upset me greatly.
Let’s face it, this really was just a publicity stunt for the exoskeleton system. Bonnie Burton reports on C|Net Dr. Miguel Nicolelis, the lead researcher that created the system, as saying "You go to Sao Paulo today, or you go to Rio, people are talking about this demo more than they are talking about football, which is unbelievably impossible in Brazil".
PROMISING TECHNOLOGY DOES NOT RESOLVE REAL WORLD PROBLEM
After my initial negative reaction to the news, I read up on this particular exoskeleton system. It appears they have made some technological breakthroughs that are of interest. In particular, the system responds to neural activity: You can control it with your thoughts. That’s cool.
The system also apparently mimics the sense of touch, giving the wearer the impression that the limbs are actually moving. To me that falls in the "interesting experiment" category but it doesn’t resolve a real world problem.
Apart from the technological aspects, exoskeletons aren’t new. I haven’t been complimentary about previous efforts. I wrote about Rex the robotic exoskeleton in 2010 and about a 3D printed exoskeleton earlier this year. To recap my chief complaints against exoskeletons:
It is impossible to wear the device and use your wheelchair at the same time.
You can’t use them in real-world situations, like going grocery shopping, going to your kid’s concert, taking the bus to work, etc.
You can’t use them on your own.
People already stare at you when you use a wheelchair. Exoskeletons are impossible to miss, making the wearer even more of a freak.
The “Rex Personal” sells for US$ 150,000. Yes, $150K. How does that resolve a real-world problem? The majority of people with disabilities are unemployed, living well below the poverty limit. Consider that many people can’t even afford a $500 cushion that would prevent pressure sores because their insurance companies won’t cover it. How could anyone think an exoskeleton is within the reach of people with disabilities?
This event, this publicity stunt, manages to both inspire able-bodied people about disability and devalue the experience of disability.
Stella Young, a journalist, comedian and disability rights activist gave a splendid TedX presentation about inspiration porn. She says:
And these images [...] are what we call inspiration porn. And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we’re objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, “Well, however bad my life is, it could be worse. I could be that person.”
This is it folks, this "paraplegic man", standing and opening the World Cup has INSPIRED people. "Look: He can stand. He can kick a ball. It’s a world first!"
They took a guy who is paralyzed, put him in gear that is not fit for purpose and costs the earth, and got him to give a weak kick on a ball to open the games. He couldn’t even balance without assistance. A 5 year old kid would have done a better job!!! But a 5 year old wouldn’t have been as inspiring as the paraplegic in that gear. So what is the *real* message here? What impression are people going to be left with? “Poor guy, he needs all this complicated gear, AND he needs the help of two people just to stay balanced, in order to poorly accomplish what even a kid could do”.
Everyone seems to get excited about the fact that "the paralysed will walk again". GeoBeats News ended a video segment about the kick by saying: "Those who witnessed [that] kick first hand got to see what life can hopefully be like for paraplegics in the future."
Do they really think that strapping a heavy, clumsy, slow, awkward, expensive piece of hardware on you will suddenly make everything okay? And isn’t that statement implying that life as a paraplegic *in the present* is horrible?
On AttitudeLive, Red Nicholson wrote a post that reflects my feelings about the obsession with walking and exoskeletons.
You’d be forgiven for thinking, given the headlines, that as wheelchair users, our entirely lives are spent waiting for the day when someone builds us an ugly, cumbersome, expensive, alpha-version robot, pats us on the head and says ‘There ya go! Now you can walk!’.
What’s so damned important about walking? If it weren’t for stairs, and steps, and narrow doors and non-accessible public transit, and bathrooms too small to fit in, and narrow parking spaces, using a wheelchair wouldn’t be so bad. Note here that the source of these problems are outside the person itself. The problem is not the person’s body, and modifying that "broken body" will not automagically fix a non-accessible society .
I guess I’m supposed to feel that “we ought to find a cure at all cost”. I’m supposed to think that we’ve GOT to fight disability. That it’s better to stand up, even with expensive and bulky paraphernalia than it is to use a wheelchair with speed, grace and reduced effort. It very much feels like an ableist perspective on disability.
And that very perspective is why euthanasia and assisted suicide laws are so dangerous for people with disabilities. That perspective is what leads perfect strangers to come up to me and tell me “I don’t know how you do it, if I were in your position I’d rather be dead”. That perspective is why people see nothing wrong with legalising assisted suicide, and don’t see that there’s a profound dichotomy in our society where able bodied suicidal folks are told to call the suicide hotline or seek counselling, while “we understand the poor cripple wants to die, what a horrible life he leads”.
CONNECTING THE DOTS
Forgive me for raining on that opening kick’s parade. But really, I cannot cheer for it. I connect the dots and see a different pattern than you do. I know others see it the way I do, I’m not alone, but we aren’t the majority. We aren’t the norm. No amount of expensive and clumsy hardware will make us normal. Glorifying such a publicity stunt as that opening kick just deepens the trench. It excludes people with disabilities much more than it includes us.
Nicolas Steenhout is Executive Director at Vivre Dans La Dignité, in Montreal.