Some of you know that I once had a life before ‘bread’, and that in that life, I worked with and among persons with developmental disabilities. Only a small portion of those folks had a developmental disability known as Down Syndrome, which interestingly is most often a mild disorder – the large majority of those with Down Syndrome are very verbal and in fact tend to blend into society well – many find employment in all sorts of less skilled jobs, and prove themselves to be valued employees – traits such as honesty, loyalty, and total adherence to rules come to mind as job characteristics of almost all of those with Down Syndrome. If it weren’t for the fact that almost all with Down Syndrome have a classic and easily identifiable facial stigmata, a large number of those with Down Syndrome would not even be suspected of having a developmental disability.
I came on this article recently in the New York Times, and it reminded me of an experience in my life that had profoundly changed the way I thought about disabilities, and the persons whose lives are most affected by Down Syndrome, individuals with Down Syndrome. The article deals with the progress made by science in finding cures for, or amelioration of, Down Syndrome, something that the average person would probably agree was always a good thing. As you read the article, you may be surprised to learn that not every parent of a child with Down Syndrome would rush to take advantage of a ‘cure’ drug that became available. How can that be? Isn’t that what research into birth defects is all about? Isn’t that what everyone wants?
The experience to which I refer above answered those questions for me, and I’d like to share it with you. In the mid nineties, I sat one day in a huge auditorium in Dallas during a national convention of the disability advocacy organization for which I worked, and along with some 2000 fellow workers, parents of persons with disabilities, and developmentally disabled persons themselves, listened with much interest as a panel of ‘experts’ discussed advances in genetics and medicine that very soon would lead to cures for many types of developmental disabilities.
At the end of this presentation, I think that most of the listeners in that auditorium felt as I did that day – we were elated to hear of events that would bring an end to the pain and suffering of families, and the difficulties of individuals with disabilities, such as those we worked with daily. I’m sure that most of us were a little surprised when the moderator announced that a panel of ‘self advocates’ (a term given to persons with disabilities, especially those who wish to speak for themselves) wanted time to express their reaction to the last presentation. There was a sudden hush among the huge group, as the awareness rose that something unique and significant was about to occur.
For those of you who know someone with developmental disabilities -and you probably do, since 3% of the world’s population is identified as DD (and more who are not officially counted)- it is likely that the persons you know would not make good spokespersons for themselves – the great majority would not. But we were about to witness several exceptions to that rule – these individuals were not only developmentally disabled, but they were also articulate and thoughtful – and they were about to lead many in this audience -including myself- to an understanding and a sensitivity that had eluded many.
What was about to happen was a unique experience for this organization – seldom had they listened to a person with disabilities speaking for themselves. Instead, there was a long tradition of having parents speak for their disabled sons and daughters - it was assumed that the disabled could not speak for themselves. This almost universal assumption has some validity, but is far from being ‘universal’. And these individuals were not only willing to speak for themselves, they were able to do so with the skill of an accomplished public speaker – and their message was about to shake the very foundations of the beliefs of their mothers and fathers, and all the advocates who thought they always understood what was best for their sons and daughters.
Four individuals appeared on the stage, and one by one, came forward to express their reactions to the reports they, and we, had just heard (they of course had prior awareness of the content of the previous presentation). In essence, their message was that they were not in favor of mental retardation being cured, if what that meant was that their identity as a person would be lost – in fact, it was fearful to them to think that the self awareness that they currently knew as their own personality, their being, and their sense of worth, would change to something new – someone new – and that change was not a positive thing to them, even if it made them more productive, more intelligent, and more independent – they would lose themselves in the process.
Another added the thought that if this scenario were to take place, it might actually make the lives of those remaining individuals with developmental disabilities more difficult, for they would have far fewer peers with which to feel comfortable among, or to make friends with – and with fewer individuals with DD in the world, it may make it that much more difficult for them to be accepted into the ‘normal’ world, and for that world to adjust to them. And with far less individuals with DD to rub elbows with, the world may retreat to the attitude that prevailed during the last several centuries, when the mentally retarded were hidden away to shield them from the pain of the persecution and ridicule they would otherwise endure.
The final panel participant ended by suggesting that he and his friends did not look forward with hope to this future, but rather fear and uncertainty – the benefits, as he saw them, did not make up for the loss of a person’s self, or the loss of an entire class of persons, for that matter.
Several important things had happened that day in the world of developmental disabilities – for one, a new perspective on an important issue -maybe the most important issue facing this group- had just been articulated - and not as always before, by a parent of someone with developmental disabilities, but by persons with developmental disabilities themselves – and that would change this advocacy movement forever!
It is impossible -in my opinion- for a person without a disability to understand the emotion, the pain, or the daily impact of living with a disability – I know this well, and am able to admit it. Yes, a parent of a child with a disability has an increased sensitivity to all the above, but it’s still not the same as having to live with the disability. The New York Time’s article above is built on the attitude and opinions of those those who have intimate knowledge of disability issues, but if you noticed, there are no quotes from persons with disabilities – and the NYTs is a paper that prides itself on being as objective as a newspaper can be – and yet they reflect the still prevalent social attitude that the developmentally disabled are not able to speak for themselves.
In their defense, in the sidebar of the NYT’s article, there is a companion blog article that not only comes much closer to voicing the same sentiment as that expressed by the self-advocates back in Dallas (again, by a parent), but digs deeper into the complexity of this critical question. Should you wish to gain a new perspective yourself on how complex this issue is, you might want to read the comments section, and note that the great majority of comments are expressed by those who think they have the best interest of the disabled individual front and center, but few ever think to suggest we ask a disabled person for their opinion.
As I am reminded of the complexity of the of the question of the cure for Down Syndrome, I can’t help but think of a futuristic, but completely appropriate scenario, and how it applies to this question. Consider this – one day in the future of our world, we are visited by aliens, who we soon recognize are far more advanced and intelligent than we are – we soon also recognize that they wish us no harm, and in fact, have a very paternalistic attitude toward us – they soon begin to enlighten us to the secrets of the universe, but eventually they announce that no additional progress can be made unless we are willing to allow a genetic makeover of all future mankind – in other words, in the interest of progress, we would say goodbye to our old selves, and become entirely new beings – we would be remade in the likeness of our alien visitors, who sincerely believe that this is in our best interest.
How would that make you feel? Isn’t that a little like how Down Syndrome folks must feel upon hearing that they can be cured?
Top- from l to r: joycespage.downsyndrome.com; peoplebychoice.com; wiusd.org
Mid 1- wellsphere.com
Mid 2- mcssl.com2