They're hurting and killing our children

I'm having one of those periodic slumps where it seems so much is wrong I can't work on it anymore. You know?

You do if you raise, love, or care about people with mental retardation and related developmental disabilities.

First we have moms killing their kids because they "just can't take it". We have Karen McCarron suffocating her autistic daughter to "end her pain". We have justified reaction to this from the disability community. We have newspaper columnists trying to say that the murder was wrong but "understandable".

Let me add my voice, for what it's worth:

It is hard to raise some children with complex disorders who have behaviors that are not understandable or controllable, and that are occasionally dangerous to self and others.

It is not wrong to acknowledge this. It is not a condemnation of disabled people nor of people with complex disorders to say it is difficult to parent these children.

It is wrong to kill your child because of his or her disorder, no matter the difficulty.

Next we have people abusing and killing people with mental retardation in state institutions in Missouri. To quote the St. Louis Post-Dispatch:

Mentally retarded and mentally ill people in Missouri have been sexually assaulted, beaten, injured and left to die by abusive and neglectful caregivers in a system that for years has failed at every level to safeguard them.

While recent publicity over two of those deaths has sparked outrage across the state, a Post-Dispatch investigation has uncovered widespread mistreatment in 19 large state institutions and hundreds of smaller group homes supervised by the state across Missouri.

The abuse has been largely shielded from the public by broad secrecy laws, shoddy investigations and ambivalent police and prosecutors, and it has been perpetuated behind a series of broken promises by state officials to do better.The abuse and neglect can be measured in numbers: 2,287 confirmed cases of abuse and neglect of residents since 2000. Of those, 665 resulted in injuries with 21 deaths.

These exposes are extremely sad to parents of children with mental retardation, who grow up to be adults with mental retardation who live in institutions (and even a "group home" is an institution) and will live perhaps many years after a parent's death. Whom do we trust?

That we have not come too far in figuring all this out can be gleaned from reading the short history of the Arc of the US. Parents began organizing into what would become a national movement in the 1930s. 75 years later, they are still killing our kids in Missouri.

And elsewhere. Missouri is just a convenient example.

All these horrors point up for me, once again, the intricately entwined nature of arguments about "quality of life". I would prefer not to be on either extreme of this convoluted and circular argument, one side of which goes something like this:

~~~Babies are born who will become people with complicated disorders that include significant cognitive impairment.

These people will be costly to help.

We can prevent this by getting rid of the people who are costly to help. We can prenatally screen, we can practice euthanasia in the NICU, and we can kill the others some way we haven't yet proposed.

Therefore, we should kill them because we can; the ones who are left are on their own.~~~

And the other side of which goes something like this:

~~~Babies are born who will become people with complicated disorders that include significant cognitive impairment.

All human life is worthwhile, and quality is not a value based on presence or absence of disability.

Therefore it is wrong to ever discuss how difficult it can be to parent a child with a complex disorder, because this discussion implies judgement of value, worth, or quality.~~~

To the first argument I am unalterably opposed.

The second argument seems logical except it is based on a falsehood, and that is that telling the truth about a family's situation implies a judgement has been made about value. And that is not only false, it is a dangerous precedent. It is OK to talk about how hard it is to parent a particular child; talking about difficulty is not the same as making a value judgement.

If the disability community does not want "outsiders" to make this assumption (for instance, that dependence upon technology for continued life equals lack of value) then "insiders" should not make this assumption either (for instance, by saying parents who discuss the traumatic experience of raising particular children are trying to convey a judgement upon the child's worth rather than simply trying to convey traumatic experience).

My two cents today; in a foul mood; despondent and devastated by news of so much loss.

But determined that I've got to keep on somehow, anyway.

mary