Special needs adoption from a Jewish perspective.

Special needs adoption from a Jewish perspective.

Sunday, September 8, 2013

Ableism and Disableism Part 3: Down syndrome cure/treatment/research

Part of the tension between ableism and disableism rests on the distinction between fixing the disability and fixing the person. Or, which aspects of disability should be fixed in the disabled person, and which should be fixed in society's acceptance of disability.  We see this in many disabilities:  There is a significant segment of deaf culture which rejects cochlear implants, making the statement that deafness is not a problem.  Likewise, increased wheelchair accessibility means that mobility-impaired individuals can get around.  Do some seek prostheses in order to restore the ability to walk?  Yes, but like cochlear implants, it is one option.

In the Down syndrome community, there is a similar tension.  Do we seek every possible treatment and therapy in order to "normalize" children with T21, or do we instead seek to make society more accepting and accessible to them?  With the new potential treatments/cures coming out of research laboratories, there is also the question of mucking around with people's personality in the name of such "normalization".  Intellectual disability and its treatment involve changes to the brain, an incredibly complex organ where, in fact, our personality resides.  We know with everything from ADHD to depression, psychoactive medications often have unpredictable side-effects.

I don't think it is really an "either/or".  I think that it is great that cochlear implants are available.  Many people's lives are greatly improved by them.  It is also great that many people have the option to do without them, and nonetheless live full lives.  It is great that the medical research community is looking to improve the lives of people with disabilities, and also that we work to make society more inclusive and accessible.  In fact, I believe that those two trends, far from being opposite, actually catalyze each other.  When people with disabilities are included, awareness of their needs rises, and researchers are inspired to address them.  At the same time, as various means are available to overcome the disabilities, inclusion becomes easier.

When researchers find a way to improve brain development in pseudo-Down-syndrome mice, or use stem cells to selectively disable the 3rd copy of the 21st chromosome, they are generating new options for parents of children with Trisomy 21.  Would all parents rush out to get these treatments when they become available? Of course not.  Most people are NOT early adopters of new treatments.  Some would, blazing the path for those who come after them, as we see which treatments actually improve outcomes.  Also, some parents who would otherwise opt to abort based on a prenatal diagnosis of T21, would instead carry to term and access the new treatments.

Children with Down syndrome can access physical, occupational, and speech therapy.  They can get medical and surgical treatment for heart defects and gastrointestinal issues.  They can get vision and hearing aids, as well as specialized nutrition regimens.  All of these are designed, in one way or another, to "normalize" them in ways which will make life easier.    If the new treatments assist in this goal, I am sure that many parents would pursue them eagerly.

What do you think?

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