More than one billion people in the world today live with some form of disability; that’s one in seven of all of us. Almost everyone alive on the planet will, in his or her life- experience temporary or permanent disability of one form or another.
With that in mind consider that in our supposedly advanced society, people with disabilities are subject to economic and social inequalities, violations of dignity and in some cases denied their very autonomy. Whilst the levels of such basic rights violations may vary from place-to-place, the truth is that they occur everywhere from the richest countries in the world (where buildings and transport systems may not be designed with the disabled in mind) to the poorest (where people may be subject to violence, prejudice or imprisonment).
Before we progress however, it’s important to realise that the term disability is misleading. Human beings can become impaired through physical, mental or sensory limitations; but that does not become a disability until that impairment stops them from participating in community life. The term is also used (wrongly) as a broad catch-all for a diverse group of people, and used with the conviction by which we categorise gender. We say (usually) with some certainty that a given person is male or female. Unfortunately, we are also just as quick to categorise an individual as disabled or not. By doing this, we oversimplify and perhaps trivialise the fact that disability – rather than being something looked upon as a ‘condition’, is really a phenomenon that occurs at a complex intersection between our humanity, policy, society, culture and the environment. The complexity of the topic combined with significant political and social blindness towards it, has led to disability becoming one of the most significant un-addressed issues of modern time.
The Universal Declaration of Human Rights, signed on 10 December 1948 supposedly expressed the baseline level of rights to which all human beings are entitled. For many groups who were marginalised, even this was not enough to defend them. Specific conventions defending against discrimination on the basis of race, gender and youth were adopted in 1969, 1979 and 1989 respectively. It wasn’t until the 21st century however, in 2006, where the United Nations formally agreed on the Convention on the Rights of Persons with Disabilities, with the aim “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”
So what is the current state of the world faced by those living with impairments and disabilities?
In this exclusive series of interviews, we speak to Javed Abidi (Chair, Disabled People’s International DPI), Sir Philip Craven MBE (President, International Paralympic Committee IPC) and Professor Hugh Herr (Head of the Biomechatronics research group at MIT Media Lab and Founder of BiOM Inc). We discuss the human rights and social injustices faced by the those living with impairments and disabilities around the world, look at issues ranging from economics and politics to culture and sport and discuss opportunities for the future and whether technology could even end disability.
Javed Abidi is Chairperson of Disabled People’s International and Honorary Director of National Centre for Promotion of Employment for Disabled People (NCPEDP).
Javed was affected with spina bifida at birth and has been a wheelchair user since 15. After graduating summa cum laude from Wright State University in Dayton, Ohio, U.S.A, he came back to India to pursue a career in journalism. He made his foray into the Indian disability sector after a chance meeting with Smt. Sonia Gandhi. This led to his appointment as the Programme Officer in charge of the Disabled Persons Welfare Unit at the prestigious Rajiv Gandhi Foundation. He served there for five years from 1992 to 1997.
In those five years, several pathbreaking initiatives were launched, the most noteworthy being the Lifeline Express Project and the Motorised Tri-wheeler Scheme. It was during this period only that work began specifically on cross-disability issues, particularly the drafting and passage of the Disability Act 1995.
In 1993, he founded the Disabled Rights Group (DRG). He was also instrumental in setting up of National Centre for Promotion of Employment for Disabled People (NCPEDP) in 1996 and has been its Director since 1997. As an impassioned advocate for India’s disabled citizens, he has given voice to an “invisible minority”, one that has been denied to them by both political and social sectors for decades.
He has successfully led several path breaking advocacy initiatives in India. This includes filing a Public Interest Litigation (PIL) in the Supreme Court of India in 1997 regarding the non-implementation of The Disability Act. The case continued for over a year, at the end of which the Court directed the Union of India to undertake several measures, for example the appointment of the State Disability Commissioners, etc.
Abidi has also drafted the chapter on disability which has been reproduced as it is in the 11th Five Year Plan (2007 – 2012); catalysed 3% reservation for disabled people in Indian Administrative Services; ensured inclusion of disability as a category in Census 2001; facilitated the 2005 Inclusive Education Policy for Children and Youth with Disabilities to ensure education will be disabled friendly by 2020; played an active role in creating awareness and expediting the ratification process of UN Convention on the Rights of Persons with Disabilities (UNCRPD). Other successful advocacy campaigns include ensuring the inclusion of disability in the Right to Education Act; revision of Guidelines for Indian Government Websites mandating WCAG 2.0 compliance; proper enumeration of people with disabilities in Census 2011; inclusion of people with disabilities and disability experts in the various Steering Committees formulating the 12th Five Year Plan (2012-2017) to ensure that disability is looked at a cross-cutting issue and the creation of a separate Department of Disability Affairs
Has formed the one and only cross – disability network across India called National Disability Network (NDN) with a reach in 324 districts, He is an Ashoka fellow and has been awarded the IBN 7 Bajaj Allianz Super Idols – Lifetime Achievement Award.
Sir Philip Craven has been passionate about sport all his life. He was born in Bolton in the north of England, and educated at the University of Manchester where he graduated with honors in 1972.
Sir Philip is an accomplished five-time Paralympian in wheelchair basketball (1972 to 1988) and swimming (1972). He won gold medals in the Gold Cup – World Championships, European Championships, Commonwealth Games, and the European Champions Cup.
His many astounding contributions to Paralympic sport led to his election as President of the International Paralympic Committee in 2001. Following this he was elected a member of the International Olympic Committee in 2003 and a board member of the London 2012 Organizing Committee for the Olympic and Paralympic Games. He was President of the International Wheelchair Basketball Federation from 1998 to 2002.
Away from the basketball court, Sir Philip was knighted by Her Majesty Queen Elizabeth II for services to Paralympic Sport in 2005, awarded a Doctor of Science, Honoris Causa, from Manchester Metropolitan University in 2006, and an Honorary Doctorate of Laws from Nottingham University in 2007. In 1991 he was made a Member of the Order of the British Empire (MBE) by Her Majesty Queen Elizabeth II for services to wheelchair basketball.
He is a keen amateur de vin and has been awarded the highly prestigious Chevalier de l’Ordre de la Croix de Bourgogne (2007). Sir Philip and his wife, Lady Craven, enjoy gardening, sports, and travel.
Hugh Herr directs the Biomechatronics group at The MIT Media Lab, and is the founder of BiOM, which markets the BiOM as the first in a series of products that will emulate or even augment physiological function through electromechanical replacement.
His research program seeks to advance technologies that promise to accelerate the merging of body and machine, including device architectures that resemble the body’s musculoskeletal design, actuator technologies that behave like muscle, and control methodologies that exploit principles of biological movement. His methods encompass a diverse set of scientific and technological disciplines, from the science of biomechanics and biological movement control to the design of biomedical devices for the treatment of human physical disability.
His research accomplishments in science and technology have already made a significant impact on physically challenged people. The Transfemoral Quasipassive Knee Prosthesis has been commercialized by Össur Inc., and is now benefiting amputees throughout the world. In 2006, he founded the company iWalk Inc. to commercialize the Powered Ankle-Foot Prosthesis and other bionic leg devices. Professor Herr’s work impacts a number of academic communities. He has given numerous invited and plenary lectures at international conferences and colloquia, including the IVth World Congress of Biomechanics, the International Conference on Advanced Prosthetics, the National Assembly of Physical Medicine and Rehabilitation, World Economic Forum, Google Zeitgeist, Digital Life Design, and the TEDMED Conference. He is Associate Editor for the Journal of NeuroEngineering and Rehabilitation, and has served as a reviewer for the Journal of Experimental Biology, the International Journal of Robotics Research, IEEE Transactions on Biomedical Engineering, and the Proceedings of the Royal Society: Biological Sciences. He has been invited to participate in joint funding proposals from other universities and corporations, and has served on research review panels including the National Institute of Health, the National Institute on Disability and Rehabilitation, and the Department of Veterans Affairs. In 2007, He was presented with the 13th Annual Heinz Award for Technology, the Economy and Employment.
Q: What does the term ‘disability‘ really mean?
[Javed Abidi] Disability is an impairment, but an impairment is not necessarily a disability. The interaction of an impairment with the social barriers that surround you may or may not turn that impairment into a disability. For example; I am a wheelchair user, and If I see a building in front of me with three steps, I cannot get into it. If I cannot get into it, it’s not because I’m on a wheelchair; it’s because the building has 3 steps. If the same building had a ramp, my wheelchair would not be an impairment and I could easily get into the building.
[Sir Philip Craven] The word disability is the embodiment of pure negativity… and when it’s used as a catch-all such as ‘the disabled,‘ it’s even worse. Everyone is an individual, and those individual personalities should shine through, not the labels.
Ask a person who’s getting a bit older and may have a visual, hearing or mobility impairment if they’re disabled? They’ll throw that title off with vehemently! They view disability as being a community they don’t belong to.
I’m Philip Craven, I’m me… the fact that I use a wheelchair is immaterial. I am what I am.
At the 2010 Winter Olympics in Vancouver, we were staying at the Westin. They had an ‘adapted bathroom,’ with a little sink that never emptied. I called one of the hotel team who pointed out the sink was on a siphon, and that siphon had to be half-filled with whatever you had spat-out into the sink before it emptied. I told the hotel it wasn’t acceptable to have something this crude in a 5-star hotel, and the response was… “well, what do you expect… it’s a disabled sink in a disabled bathroom…” This clearly illustrates the way people think- assuming we want something different- when we don’t!
If you’re told you’re disabled long-enough you start to feel it. I sometimes get asked if things changed for me after my accident. They didn’t because I damn-well made sure they didn’t and fought against it… You have to throw off your impairments, and make sure that you have the confidence to decide your own destiny- rather than allowing others to decide it for you because you’re disabled.
[Prof. Hugh Herr] Sometimes people view disability as something permanent when, in fact, our bodies are malleable with technology. One could be disabled for a portion of one’s life, and then not be for another; the body is malleable and transformable with technology. Disability is not a fixed condition, it’s fluid. This is good news- it means that we can ultimately eliminate disability.
When I was first sent to the rehabilitation centre after my legs were amputated, I was fitted with my first pair of artificial limbs. The rehab Doctor asked me what I wanted to do and I said that I wanted to return to mountain climbing, ride a bicycle and drive a car. He told me I could drive a car with hand controls, that I may be able ride a bicycle, but that I would never be able to return to mountain climbing. When I was going through this transformation from a ‘normal’ body to an ‘unusual‘ body, society communicated to me that not only was I to be pitied… but the aids and prostheses that the medical establishment gave to me were to be accepted and that was that. That’s an emotionally troubling and inaccurate message.
I’ve spent my career convincing people that they can flip this message and push the boundaries of technology and society.
Q: What is the true scale of discrimination faced by people living with impairments and disabilities?
[Javed Abidi] There is gross discrimination taking place, and to deny it would be like pulling wool over your own eyes. Historically, disabled people have been discriminated against across the world; not just in the Global South but also in the ‘so called‘ developed world.. It was only in the late 1960’s and 70’s that a movement began in certain parts of the world. America and some of the Nordic countries gained an advantage over others. Even in a country like the UK, the first disability laws arrived only in 1995.
When we talk of disability, we are referring to over 1 billion people; 80% of whom are in the Global South, the poorer countries of the world. Here we are in the 21st century, and we have practically nothing in place for them to protect their rights when it comes to accessibility, education, social-living and more.
Historically, one of the biggest mistakes the world made was to look at disability as a pity or charity issue. If you go into the history of disability in the USA and Europe, and even today; money is collected in Churches for the welfare and wellbeing of people with disabilities. When you do that, you are automatically painting a picture of these ‘poor, crippled, handicapped people… who are in need of your charity…‘ That should never have been the case. Disabled people never asked for anyone’s charity, what they have asked- and are asking for more vociferously now- is a level playing field.
Let’s look at the same question differently… If we go back to the 30’s, 40’s and 50’s – if the world had looked at disability as a human rights and development issue and not a charity or a pity issue, we could have made sure that our transport systems and buildings were accessible by all. This would have ensured that disabled people were able to step out of their homes, to move around, to go to schools and colleges, attend universities, and go to jobs.
Why was this so difficult to do? Disabled people are not asking for quotas, concessions or handouts- but simply the same opportunities as non-disabled people. Because of these historic mistakes, disabled people lost out on 40-50 years of global development in which most of the world’s infrastructure of buildings, buses and trains, was developed. Disabled got left out of this ‘progress’ and a world emerged where- by default- disabled people are at a huge disadvantage. If people cannot get out of their homes, cannot get on transport, cannot get into an office building… If 90% of schools are inaccessible to disabled people… as they are in Asia…. then instead of levelling the playing field, it became very warped.
The majority of laws protecting the rights of the disabled came into effect from the 1990’s and onward. The world is now slowly waking-up to realise that disability is a development and rights issue, and this is a paradigm shift.
The damage that has been done to the rights of disabled people is undeniable, and I feel that it could take 50-100 years to put that right.
[Sir Philip Craven] I personally don’t encounter any discrimination that often, but I wouldn’t go to places or meet with people again if they gave me that impression. That said, I’m sure that much discrimination exists.
The real way to change perceptions in society against these mythical ‘groups‘ of people is through positive experiences, and not to just ram new laws down their throats. In some cases however these laws are necessary. Wider parking spaces for example, mean that people can get out of their chair into the front seat of their cars! Education is imperative in all formats to do this, as it allows people themselves to change their minds about others rather than being told they have to believe or act in a certain way.
Around 10 years ago in the USA, Paralympians were called ‘super-crips‘ by some people in the communities they themselves were supposed to belong to; perhaps because people couldn’t associate with them- but in truth, they are there to showcase what is possible when you really put your mind to it…
You only change perceptions by showing yourself as being what you are. People won’t do it for you…
[Prof. Hugh Herr] There’s rampant discrimination going on. Looking at my case, that of Oscar Pistorius and any other athlete that has unusual bodies you see this manifest. When you’re an athlete with an unusual body (leg amputation, blindness and so on..) and you’re not competitive against persons of normal physiology- you’re called ‘courageous.’ It’s not a word like ‘talent,’ courageous means you’re performing because you try hard- it’s cute, but it’s not cutting-edge or state-of-the-art. There’s been a few times in history where that person with an unusual body, as an athlete, starts being competitive with persons of normal physiology. The moment that happens- instantaneously- the attitude shifts from that person being courageous, to being a threat. That ultimately and typically leads to claims of that person not being a great athlete, but rather that technology is helping them cheat in some way.
Broadly across society, there is a discrimination around the perception that having an unusual mind or body is weakness- that you’re weaker, that you’re crippled. Technology is so important- it can change that social view to something far more positive wherein we will see a future world where that person with an unusual body or mind will be bionic. They’re going to be powerful, attractive and won’t be discriminated against. They will be equal members of a broader society
Q: What are your views on the perceptions of how disability occurs versus our views of the people themselves?
[Javed Abidi] Today, with our improved healthcare systems, people are living longer. It’s no longer unusual for someone to get to 90 years of age in many countries of the world. As people age, they acquire disabilities. You don’t acquire disability only out of tragedy… that’s an ancient and stereotypical concept that has been woven into our history- that disability is something that befalls you when you do bad things. This is re-enforced in countries like India with social concepts such as karma, and the misinterpretation of concepts in most religions. Disability is a part of our life cycle. Each one of us will experience disability in our lifetime; not necessarily out of an accident or natural disaster, but even if you live in a very safe and healthy environment, and you’re the richest person on earth who lives a responsible life and eats great food – you’ll live longer – your body will age – and as your body ages, you acquire disabilities.
We need to shift our mindset, and the world needs to catch-up. The past cannot be wiped-away, but the future can be written. We have to make a pledge that no building in the world will ever be constructed without considering access. It doesn’t cost a single penny extra, it’s a design issue… The world, and our world leaders and opinion makers are yet to realise the full potential of universal design. We need to have a world with infrastructure, built environment and services that all of us whether old, young, tall, short, man, woman or otherwise can use with dignity and safety.
Q: To what extent is there political will to improve the situation faced by those living with disabilities?
[Javed Abidi] After all these years of making mistakes in the 30’s, 40’s, 50’s, we have built a very unequal world that is meant only for the fittest. In India, until 10-15 years ago, we had a policy that said that any building up to 4 storeys did not need a lift. The working presumption was that the average Indian was healthy enough to be able to climb 3 or 4 storeys. A friend of mine who came to visit me a few years ago said that India was built for superman or superwoman because these idiots.. whoever came up with that stupid policy… thought they would never age. You have a lot of government colonies in India where you are allocated flats on 2nd, 3rd or 4th floor in the prime of your youth. You are- then- arrogant, but 20-30 years later you age. I have heard horror stories of people who are on the 3rd or 4th floor of buildings and who cannot even go down steps to the park because of mobility issues.
Finally, in the year 2007, the United Nations passed the Conventions on the Rights of People With Disabilities UN-CRPD. The United Nations had a convention on the rights of women, the rights of children and the rights of refugees, but even the United Nations- which is supposed to be the cradle of human rights- failed to look at the issue of disability with any seriousness until 2007. As we speak, around 140-150 countries have ratified it, and many have not. My concern is that while that convention has been drafted and passed, and while many have ratified it, there still isn’t political will. I’m yet to see the issue of disability being taken up with the seriousness it deserves… the UN-CRPD has started a discourse, but progress is still very slow.
Unless there is political will, no change will happen. Most issues facing disabled people can be solved with the stroke of a pen, they don’t even need resources. You need resources to correct the damage of the past, but I’m saying we should put that aside for the time being- all the buildings that are not accessible, let’s put blinkers on- but why is it so difficult for any government to pass law that means that for the future – no public building will be constructed without accessibility. When you procure a new plane, a new bus or new transport system… why can it not be accessible.
The reason that politicians do not look at disability with the seriousness the issue deserves is because they don’t see disabled people as a potential vote-bank. Historical failures mean that many disabled people are virtual prisoners inside their own homes. If you go to an average country in the Global South, you just don’t see that many disabled people. If you go to a mall or station or cinema in India, Nepal, Pakistan or elsewhere- you hardly see any disabled people. Is it because they don’t exist? are there less disabled people in the Global South than the USA? my contention is that there are more! Because the disabled are not able to step out of their homes, because they have not been able to access education they are unemployed, because they are unemployed they are not empowered. And that’s 1:7 of all humanity that remains unseen, unheard and unaccounted.
[Sir Philip Craven] There’s a lot more that needs to be done.
One year before the winter games in Vancouver, I met with the Governor General of Canada; the Queen’s representative. I told her that when I travel around the world, I had used Canada as a country which- at that time- had made the most progress. I asserted they were about 30% there… She asked what I meant, and I explained it to her in very general terms and told her that the games could lift it to 70% but then she has the obligation to maintain it and create a legacy. All countries have done 30-40% of what needs to be done, maybe less- even zero in some countries. The west hasn’t got all the answers however. If you give a different impression to government- who ultimately support the greatest change- and show them there is a positive way forward, rather than adopting the position of charitable beneficiaries- we can enable people to care and develop themselves.
In Britain, I was very pleased that what was the Disability Act now falls under the Equality Act. Some people may assert that not a lot has changed, but the change in terminology is very important. The United Nation Convention for the Rights of Persons with Disability (2007) was similar. Countries had to first sign up to the principles and then ratify that convention. With our support, a world record 86 countries signed up to UN-CRPD on day 1! This wasn’t just an IPC success, but all our members who in turn wrote to their members. A very senior UN individual told me in Sochi 2014 that they needed my help in convincing the USA to ratify the UN-CRPD and mentioned two other conventions they have not ratified.
This goes to show that the most powerful country in the world decided not to ratify a detailed, well written and fundamentally important convention; meaning there is a lot of work that is yet to be done, and the USA is not alone in that regard.
There is only one paradise in this solar system, Earth. We have to give back and make this a home that works for all of us.
Q: What is the social, economic and cultural role of events such as the Paralympics?
[Sir Philip Craven] The Paralympics are a major sporting event, with great athletes who love competing in sport, enjoy the competition, and love winning (accepting that losing is just a step to learning how to win next time!). We have 4 key values: determination, courage, inspiration and equality. Athletes don’t view themselves as courageous but other people do… and that’s why we keep that one in there.
What’s interesting is the effect that the Paralympics have on people- who could be sports fans or just people who want to come along and enjoy a major event, as they would a concert. At the Olympics and Paralympics, everyone had a great time and the positive experiences at the event and outside left a lasting experience. I was with the Chief Marketing Officer of a major worldwide company recently and he said that London 2012 changed his life… and that’s the kind of effect that we want to have on people.
Paralympic athletes may not realise, but they are giving people something different to what they have seen for hundreds of years. They are changing perceptions and encouraging people to see that we all belong to one society.
Q: What is the role of the Paralympics when considering rehabilitation?
[Sir Philip Craven] Rehabilitation can be many things. Whether you lose mobility, become blind or otherwise gain impairment from a major accident, illness or congenital problems; you may be left thinking you have less than others, and question why ‘it’ happened to you. You may have had to go through painful operations, and so many other things which can challenge your outlook. After this? you need something that’s fun again! Not everyone likes playing sport, but many people who don’t enjoy sport have had a bad experience with it- a bad teacher, a bad coach, bullying or otherwise. Sport and physical activity, when taught properly, and when open to all to participation- can get the brain ticking.
Rehabilitation after a major injury, accident or illness is required; while physiotherapists and doctors may get you moving… it’s up to you to rehabilitate yourself and get benefit out of it.
In 1966, I was lying in bed for 8 weeks, having broken my back. I got up into a wheelchair and went to the Gym. I was paralysed in the middle of my trunk and didn’t have good sitting balance, never mind walking! In those days, the seating situation was that if you did not have good sitting balance- you would probably fall forwards out of your chair. They sat me in front of a mirror and told me to practice my balance by looking at myself. I didn’t have a problem with myself after my accident, but if I did have and if I was depressed? the last thing I would have wanted to do is see myself in this new situation 8 weeks after I was running about. Just next to the mirror was a table-tennis table. In truth, this would give you subconscious ways of developing your balance whilst also having fun. that’s just one example….
Two and a half years ago, I spent 3 weeks in a spinal unit in Southport where I had my initial treatment 47 years previously. I had broken my femur in Korea and don’t feel the area where I broke my leg. I came back on 3 planes to the UK, and that’s what they diagnosed that I’d done. General hospitals in Britain are useless at looking after paraplegics and tetraplegics from a bodily-functions perspective if they have to stay in hospital following a serious operation. My operation was wonderfully done by a surgeon, but I got out of that general hospital as fast as I possibly could- with blood still seeping from my wound- to the spinal unit. I spent 3 weeks in bed there, but made a few observations. Most of the people using wheelchairs had not been shown how to use them… there was also a purpose built swimming pool, but it was only accessible for patients between 7:30 and 8:30am because after that it was used by local schools. The money gained by this helped the trust to not make a loss! I asked more questions and found that where Sir Ludwig Guttman had brought sport and physical activity into rehabilitation for spinally injured persons in the 1940’s and 50’s, this was no longer done. It’s a scandal, and we’re now dealing with that through the Ministry of Health. There’s no real re-integration into society for these people anymore, they are treated as a body that needs fixing rather than a person who needs to fix themselves.
18 months ago I was in Finland for a presentation. I had the chance to visit a spinal unit in Helsinki which seemed to be run in the way that most should be run in Britain. It had a man and woman, one of whom was a paraplegic and the other who was a tetraplegic. They were paid to work there to help get people moving; I was doing the same in France 40 years ago, working as a sports rehab trainer and playing for the local basketball team! The head physio was really humbled that we were so pleased with their facility, but told us they learned everything they know from the UK!
Q: Have the Paralympics empowered the development of technologies to assist those who are impaired or live with disabilities?
[Sir Philip Craven] If we look at mechanical and technological support for people who need to get about, there has certainly been a positive impact. If you look at the chairs that we had to play wheelchair basketball 40 years ago, they were a massive improvement on what was there previously, but they didn’t move in the same way that today’s chairs do. All the modern good-looking wheelchairs that people use in everyday life have been developed from wheelchair basketball. This didn’t come from big companies, but from two sports people; Bud Rumple and Henk MaCkenzie. Bud Rumple developed the box frame that doesn’t fold and has better cornering. MaCkenzie and Rumple both invented the chairs with camber on wheels, and a change to wheel placement to make the chair spin more easily. All of these innovations have come from sports within the Paralympic movement such as wheelchair tennis, rugby and more. People feel good about being in a chair that moves, rather than one which is designed for you to be pushed around in.
Companies are now making super lightweight incredible prosthetics too that are allowing people to not just compete, but also go about their day to day lives with greater ease. The Paralympics also encourages people to look into new ideas and move forward to execute those ideas.
Q: What are the key technologies that are transforming the lives of people with physical and mental impairments?
[Prof. Hugh Herr] One important set of technologies relate to the interface with the human nervous system. If you can get information in and out of the brain and nerve endings, that has very important implications for disability. You could- in principle- treat conditions ranging from severe depression to limb amputation and paralysis. Many other areas of science and engineering such as robotics are making profound changes too such as actuators that replicate muscle tissue.
Approximately half of the world’s population have unusual bodies or mind. These disabilities exist because of insufficient technology, and cause a profound amount of human suffering. Using technology to eliminate disability is an enormous market with billions and billions of dollars of wealth to be created. These technologies will be drivers of the economy and will simultaneously mitigate human suffering. It’s a wonderful opportunity.
Q: What are your views on the potential for human enhancement and augmentation through technology?
[Prof. Hugh Herr] Through the mission of ending disability, society will develop technology that will serve as the basis of extending beyond normal physiologies. The same interface into the brain that exists to treat severe depression, could also be used to enhance mood, concentration or cognitive performance. The same bionic ankle that allows me to walk could wrap-around a perfectly normal biological leg and augment it. There is a wealth of technological platforms that will affect all of humanity regardless of their physiologies or minds.
Humanity will be pushed in philosophical realms to grapple with the question of what it means to be human. If you replace all four limbs of a human being, are they still the same human? normal people would say yes they are. If you start truly augmenting the brain, are they still the same human? some people would argue yes and some no. It’s a fertile ground for philosophical debate.
Q: What are the ethics and policy challenges of human augmentation?
[Prof. Hugh Herr] Like any new technological era, this raises ethical questions. There are ways of using technology appropriately and as-intended, and ways that are unintended and perhaps harmful. I think commensurate with the development of these technologies, that ultimately will be critical to ending disability, is the development of policy and law around augmentation technology. We need sophistication on technology and policy.
Technologists, scientists and all the stakeholders must be part of the committees that will look into these challenges. Often people that are not scientifically trained believe things are possible that are not, and believe things will be sooner than they will be. They may not even comprehend technologies that will be here in a decade or two, and the implications of those technologies. Scientists should be up front in that conversation.
We always need to choose policy that coaxes society in the direction of greater human diversity, and maintained individual freedoms. As an aside; we’re not doing very well. We live in an information society and largely we don’t own our own data- nor are we demanding it. We freely give away our own data. As citizens we need to be more careful as technology becomes more acute and pronounced.
There is a huge opportunity here. We can employ these new sciences and technologies to develop policy, law and culture where the individual is embraced and very powerful and has great freedom and authority. A society in which we have enhanced from our current state and widened human diversity. There’s a real risk we could go in the opposite direction… for example; in the world in which we have the technology for parents to design their offspring, it would probably result in a massive mitigation of the diversity of our specie. Our culture’s narrow viewpoint of what beauty and intelligence are would play into parental decisions on what their offspring should be. Another world that would enhance diversity would be to view the human body as malleable- as a blank sheet on which to create; somewhat like the genre of piercing or tattoos where the skin is a place of creation. Bionics enable you to do more than tattoo or pierce. If you want a third arm, you can have a third arm… What you are physically and cognitively could be flexible by your own design. That’s an interesting world, a place where our notion of beauty could change. That’s the future that I want, and the future we should drive toward.
Q: What would be your message to those living with disabilities?
[Javed Abidi] You have to live your life, and make it a full and wholesome life …nobody is going to come and deliver it to you. It’s a tough world for everyone, but a little tougher for us- with the additional difficulties we have. I myself am a person with disability, I am a wheelchair user. My condition- Spina Biffida- is congenital. I was only ‘normal’ for the first 8 years of my life. After my first surgery, I was left with a limp. I was on crutches till the age of 15, and since then I have been a wheelchair user- so I speak from experience. You have to fight, you don’t have a choice. You have to go that extra mile to ensure you get that education and those skills. Nobody will give you a job out of charity or pity. It’s an unequal world, to pretend otherwise would be foolish and you have to fight for your rights- you must demand them- and then go and get them.
[Sir Philip Craven] You have to be yourself and decide what you want to do with your life. If you have negative thoughts at the moment, you have to see what other people have done in your situation but realise it’s you that will change your life with the support of others; not others that will change your life for you.
You have to get information in your mind about what’s possible, but you need determination to go and get it, and if anyone stands in your way? fight them like mad!
Life’s a fight, it’s a struggle- and you have to take it to them. You are in a community with written and unwritten rules, but life is for freedom. You have to create your own freedom.
[Prof. Hugh Herr] Don’t accept mediocrity. Don’t accept what has already been accepted. We all have gifts to give.
I am a technologist, scientist and engineer – if that’s what you inspires you, then jump in and start designing… there are so many initiatives and technologies that need to be developed. If you are policy or legally minded, there is a lot of work to be done there too.
Jump in the race to solve this massive human rights issue.
Think of the absurdity of a world where the colour of your skin would be considered an impairment, leaving you (in the eyes of wider society) disabled. Whilst the word disability was not specifically used, it was not that long ago in human memory where the colour of your skin, or your gender would- in very real terms- prevent you accessing the vast majority of opportunities in your community. It took a century of campaigning and advocacy in both cases to make the world realise the idiocy of such asinine views.
Think of a similar absurdity of a world where people are patronised for their life achievements in-spite of their skin colour or gender, “Oh…” they said, “isn’t it brave how those [insert colour here] people are able to walk around society, even though they’re [insert colour here]…” Most reasonable people would see these views as dehumanising and yet for the billion affected by impairments, such views are a day to day reality.
The human body is unimaginably complex. Each of us is the result of 3 billion base-pairs of genetic code that created a system of roughly 37 trillion cells, controlled by a brain with 1,000 more connections than the number of stars in the known galaxy. And there are over 7 billion of us roaming an environment which we have elementarily tailored to our fragile bodies. Whilst our cognitive apparatus is designed to categorise and segment; it is impossible to deny the inevitable diversity of mankind when confronted by the quantitative nature of ourselves. We are not a population of groups with set parameters, but a population of individuals exhibiting the beautiful gamut of biodiversity which our species is capable of.
The concept of disability is a word rooted in a society built on physical acumen, but in a world now powered by knowledge, the word is redundant. Professor Stephen Hawking‘s contributions to our understanding of the universe were not diminished by his physical impairments, they were wholly irrelevant to them. In his own words, he advised the world “Don’t be disabled in spirit as well as physically…”
We need to move on from disability, and move to a world where we embrace the variety of our species and commit to ensuring that every individual is able to maximise their contribution to society regardless of their physical or mental ability, their social or economic background or any other determinant you care to use.
As philosopher Bahá’u’lláh once said, “So powerful is the light of unity that it can illuminate the whole earth.”