COMMENT: UN disability convention must adapt to the shape of things to come


By Laszlo Lovaszy, member of the UN’s Committee on the Rights of Persons with Disabilities; lecturer at the University of Pecs, Hungary; and adviser to the European Parliament

As a member of the CRPD committee, I am responsible for scrutinizing the implementation of the convention in those states that have ratified it, but it is not our job to extend or modify it.

Ten years after the convention was introduced, we are beginning to see new issues that no-one could have predicted and that are not currently covered by the convention.

This article is about one of those issues, and it is one that, as a member of the committee, I am deeply concerned about.

Even though we do not all speak the same language, music can touch all of us (my mother tongue is Hungarian, a very different language to English), even those with a serious hearing impairment like me. Why is that, and what is its relevance to evolution?

No-one can be sure, even though issues such as robotics, biotechnology and DNA-related scientific breakthroughs are becoming increasingly high-profile, as can be seen by the increasing frequency with which they are covered by magazines like the Economist, Newsweek and Scientific American.

I am almost profoundly deaf, I can enjoy listening to music, although I also sense that the music I can hear must be more beautiful to those without a hearing impairment. It is something I regret never possessing, and something I know I will never enjoy as much as hearing people enjoy.

But what if that is not true? After all, our brain can learn and understand any kind of information, as long as it is given the time to learn and adapt to it. Soon, thanks to new biotechnological innovations, we may be able to process new types of information that are currently only available to other members of the animal kingdom. We might be able to possess the navigation skills of a bat, or the eyesight of an owl.

If this happens, then the degree to which we are disabled by our own impairments could soon depend on our access to modern biotechnological innovations. Humanity could soon be able to re-design itself.

We will soon be developing new generations of smart software and solutions with the brain capacity of hundreds or even thousands of people, which will be able to learn from and teach each other.

The field of 3D printing technology – another rapidly-growing area – is interesting. Producing missing body parts for a disabled person through such technology may soon become commonplace, and the replacement parts might even be better than the original.

If this happens, people equipped with artificial body parts – or extra sensory abilities – could be in a stronger position to secure a well-paid job than those who have no such access to expensive technology. This could happen. Look at the case of Paralympic and Olympic athlete Oscar Pistorius. After he was fitted with state-of-the-art artificial limbs for sprinting, he had to be tested by scientists to ensure that he was not gaining an advantage over non-disabled athletes.

Mankind is on the brink of being able to modify its own DNA; the British parliament has recently passed legislation to govern the procedure for modifying human DNA to create three-parent embryos, in order to “weed out” serious impairments and create “healthier” offspring.

Apart from the serious ethical question of creating embryos that might be terminated because they do not prove useful, an even more serious question is this: will we soon be able to upgrade our own children’s skills, improving their sensory skills, their learning ability or their physical condition? If this is so, will we become a society in which such attributes can be purchased for the right price, and so only available to those with the necessary income? This could exclude any pretence at fair competition and social mobility within society.

Of course, the cost of developing innovations and inventions must also be taken into consideration, to maintain the interest of scientists and inventors and ensure fruitful competition within these industries. We therefore need a fine-tuned, twin-track approach.

But without such an approach, there is a risk that children born “healthy” but in a traditional way could find themselves disabled in comparison with children of the well-off. Will this leave the less-privileged members of society without any hope of ensuring a decent future for their own children?

I hope that this world does not come to pass, but it is a risk.

As a member of the CRPD committee, coming from the eastern, emergent part of Europe, I want to work for a world in which disability will not be a sign of poverty and a lack of access to innovation and inventions.

The UN convention is not about preserving a right to remain disabled, but about providing choices and opportunities. How would the convention, and the committee, adapt to a world in which those who were rich enough could buy their way out of disability, while those who were poor became ever more disabled?

That is why we need to consider this subject very seriously, and the sooner the better.

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