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?

Shrek IV

My boys loooove the Shrek movies these days.  They are pretty good movies, too! Great message about looking beyond superficial appearances, about friendship and love, and so on.

I recently saw the fourth movie with them, Shrek Forever After.  The movie hinges on two decisions made in order to make problems disappear.  The two problems are worded slightly differently, but in both cases the perennial trickster Rumplestiltskin fulfills them by making the people themselves disappear, cease to exist.

There are a few different ways to interpret this.  One is the importance of each individual, our inter-connectedness and interdependence.  The other is the wrongness of solving problems by "disappearing" them.   I am reminded of the discussion at the end of "Brave New World":

"But in civilized countries," said the Controller, "...there aren't any flies or mosquitoes to sting you. We got rid of them all centuries ago."

The Savage nodded, frowning. "You got rid of them. Yes, that's just like you. Getting rid of everything unpleasant instead of learning to put up with it. Whether 'tis better in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles and by opposing end them … But you don't do either. Neither suffer nor oppose. You just abolish the slings and arrows. It's too easy."

In my mind, this speaks also to the modern idea of "abolishing" genetic disorders such as Down syndrome by prenatal diagnosis and abortion.   Can we do it? Yes.  If done early enough in the pregnancy, all but the most die-hard right-to-lifers would accept that it is the mother's prerogative to decide whether or not to continue the pregnancy at that point, for whatever reason.  But the long-term consequence of the sum of these decisions would be to leave our society without the rich diversity of individuals, as well as to deprive our families and communities of the growth opportunity inherent in learning to accept and celebrate these differences.  In the context of Brave New World, we are neither willing to "suffer" the disabilities by learning to accept people with disabilities as they are, nor to "oppose" them by seeking new medical treatments and educational methods to improve their outcomes.  Instead, we just make the individuals themselves disappear -- cease to exist.

Ironically, even as we embark on informal eugenics to eliminate Down syndrome, other medical issues are becoming more common.  For example, diabetes used to claim many lives before adulthood.  These days, diabetics are able to live normal lives, including having children.  Thus, they propagate the propensity for diabetes to future generations at a much higher rate than in the past.  And in fact, diabetes is far more common today than a century ago.


Do we want to "disappear" our problems, or do we want to confront them, solve them, and learn from them?

31 for 21: Abortion and NBC

I barely posted this morning post on abortion in Judaism, and my husband sends me this link.  NBC Today chief medical editor Nancy Snyderman is quoted,

“I think the future will be such that you’ll find out that your child may have a genetic hit. You can fix that genetic problem, and improve your chance, a child’s chance…”

Abortion is not a treatment or a cure for any disease or condition.  Abortion does not "fix" a problem, it eliminates the individual presenting with it. Treating it in this fashion is a slippery slope with many potential unintended consequences, ranging from gender selection (which already happens extensively in many parts of the world) to reducing genetic diversity in our population, possibly resulting in harmful downstream effects which cannot be predicted.  Let's say we identify a gene for juvenile diabetes, and "cure" diabetes by aborting all fetuses with that genotype.  What other features would be lost as a result? To what extent would people be desensitized to postpartum euthanasia if the baby comes out "imperfect"? This is a huge pandora's box, even if the premise of pro-choice is granted (which I do!).

With great power comes great responsibility.

What do you think?

31 for 21: Abortion in Judaism

A couple of weeks ago I wrote some of my thoughts on abortion.  I felt that I should add some Jewish context to the subject, however.   Unlike strict Christianity, even Orthodox Judaism does not consider a fetus to be the equivalent of a full human being.  Abortion in the case of risk to the mother is not only permitted, but is mandatory.  The fetus is seen as trespassing on the mother's body, and can only remain there as long as it is a gracious guest.  Some sources differentiate between the embryonic stage and the fetal stage at the age of 40 days, when the soul is deemed to enter the fetus.  40 days is a number that comes up quite often in Judaism.  It is the number of days that Moses spent on Mt. Sinai producing the Tablets of the Covenant.  This is reflected in the 40 days from Tisha B'Av (commemorating the destruction of the two Temples, but also the sin of the Golden Calf, which supposedly took place on that day) until Yom Kippur, when we have total conciliation with G*d.   Interestingly enough, 40 days is when brain waves begin to be detected.  Although these are not the same kind of brain waves that are associated with conscious thought, the idea that these represent the soul is tantalizing.  Jewish thinkers also vary on the issue of aborting disabled fetuses.  While many argue for abortion in the case of a terminal or severely debilitating condition, more mild birth defects are not seen by Orthodox Jews as warranting termination.   However, even in those cases rabbinic sources frown on abortion, it is not seen as the equivalent of murder, but more of a civil offense on the woman, akin to an amputation.  Even when the fetus warrants consideration, the mother takes precedence.

What does this mean for children with Down syndrome?  Unfortunately, the perception of Down syndrome as a "severe disability" means that many Jewish babies with this condition are aborted.   There are those who are working to reverse this trend, given the rapidly improving prognosis for people with Down syndrome today.   I hope to be one of these!

31 for 21: Abortion

I am pro-choice.  I don't believe that government belongs between the patient and the doctor.  This is not because I think abortion is not problematic, but because I think that the dangers of prohibition are greater than those of legalization.  As with drugs and alcohol, prohibition creates a black market, as well as worse quality control and legal recourse for victims.   I remember when the pro-choice slogan was, "Abortion should be safe, legal and rare".  Then that gradually morphed into "...safe, legal and funded."  Can you imagine if the same logic was applied to drugs and alcohol?  If tax money was used to fund pot-smoking college kids under the pretext that in some cases, medical marijuana is justified?  Is abortion becoming any more rare?

As with medical marijuana, I believe that there are cases where abortion is justified.  This decision should remain between the parents and the doctors.  I believe that just as with other medical decisions, patients should be provided with full and accurate information about the nature of the procedure and the level of fetal development.  This should NOT be an easy decision.

Around 90% of prenatal diagnoses of Down syndrome result in abortion.  This is at a time that medical and educational advances are making unprecedented leaps in the prognosis of children born with Down syndrome.  Instead of seeing these advances, however, most people are seeing fewer and fewer children with Down syndrome in their communities.  As a result, we are left with 20-year-old notions of what the diagnosis means.  Medical professionals, instead of encouraging parents to have their children with Down syndrome, reinforce these outdated notions and encourage aborting children with Down syndrome, whose potential if born is growing with every passing year.

I am reminded of Aldous Huxley's Brave New World, where the character "John Savage" finds out that in this new society, mosquitoes have been eliminated:

“The Savage nodded, frowning. "You got rid of them. Yes, that's just like you. Getting rid of everything unpleasant instead of learning to put up with it. Whether 'tis better in the mind to suffer the slings and arrows or outrageous fortune, or to take arms against a sea of troubles and by opposing end them...But you don't do either. Neither suffer nor oppose. You just abolish the slings and arrows. It's too easy." 

Seems that is what our society is doing with special needs.  Rather than learning to work with the special challenges involved and grow as individuals and as a community, we seek to eliminate the challenges so we don't have to confront them.  Now, certainly we want to promote good prenatal nutrition, avoid drug and alcohol use, etc.  We don't want to induce problems!  But when is a challenge intrinsically a "problem  to be fixed" (e.g. avoiding Fetal Alcohol Syndrome) and when is it something that we should embrace? Is abortion an acceptable solution to birth defects, or is it a slippery slope to eliminating whole subsets of the population, depriving our whole society of this diversity?