Beacon Broadside

Today’s post is from Penny Wolfson, whose National Magazine Award-winning essay "Moonrise" appears in Love You to Pieces: Creative Writers on Raising a Child with Special Needs. The essay was the basis for Wolfson’s memoir, Moonrise: One Family, Genetic Identity, and Muscular Dystrophy. Wolfson is a faculty member in the creative writing program at Sarah Lawrence College.

My son Ansel always hated the notion, growing up, that he should hang around with other "disabled’ kids. If I tried to hook him up with the other physically challenged boy in his school, or wanted to send him to muscular dystrophy camp, he resisted.  "Mom," he’d complain," Just because I use a wheelchair doesn’t mean I have anything in common with other people in wheelchairs."  He thought that, even though muscular dystrophy was a genetic illness he had, it was only a very small part of who he was. And I had to rather reluctantly agree.

I’m reminded of that now in the weeks since the Palin nomination–weeks when apparently even so-called liberal women with "special" children have to remind themselves of their political affiliation because of what I see as their weird identification with Ms. Palin, and Trig, her now-famous Down’s syndrome son, displayed like a new brooch at the Republican convention and the Vice Presidential debate. 

Well, even though I do have a couple of things in common with Ms. Palin—I am a working woman; I do have a disabled  child—I cannot for a moment ally myself or identify with her; in fact I abhor everything she stands for. She does not represent my interests, she will, I believe make it harder and more costly than ever to care for a child with a disability, and she would like to forbid other couples from making their own complex personal choices about having a child with special needs.

Duchenne muscular dystrophy,
the type Ansel has, the most common version, is a genetic disease
caused by a defect in one of the X genes transmitted to her son by a
"carrier" mother. In the bad old days, before science had progressed to
the point where we carrier mothers could obtain relevant genetic
information, and when our boys weren’t diagnosed so early, a woman
could have two or three affected boys before she even knew the first
one had Duchenne. So women would see two or three sons wither and die
in their teens or twenties—for that is the outcome for boys with this
disease—after exhausting years spent lifting them, moving them, feeding
them, dressing them, turning them over in bed, fighting for specialized
education and physical therapy and accessible schools, and seeing,
finally, their young hearts and lungs fail.

Now we can have that crucial information—but in Sarah Palin’s world,
where other people would insist on making decisions for us, it wouldn’t
do any good. She would consign us all to not just one boy with
Duchenne, but possibly to several. She doesn’t appear to believe in sex
education; are contraceptives OK in her book? Does she mean to ban sex
in marriages where there are genetic diseases? How else to avoid
multiple births of disabled children to many families, which despite
Palin’s fantasy, don’t have enough emotional or financial resources to
support them? Really, who does?

Recently we returned from a two-week trip to find, via an email,
that Ansel’s aide had abruptly decided to quit his job four days before
Ansel was to begin his second year of graduate school. (Yes, despite
the very real obstacles, Ansel is living far from home and enrolled in
a rigorous program in museum studies.) We spent four frantic days on
the phone calling private agencies, social workers, and state offices
and contacting everyone we knew. I spent sleepless nights worried about
the possibility that Ansel would have to leave school—he is completely
dependent on his aide—or that I would have to leave my teaching
position, my husband and 16-year-old son, move four hours upstate, and
take care of Ansel full-time. Do you know what that would have
involved?  A bright young man of 24, already struggling with his
emotional and sexual needs, having his mother empty his urinal or lift
him off the toilet, change his clothes, drive him to class? Do you know
what it would have meant for me? Do you understand the emotional and
physical and financial costs of going through these episodes over and
over again?

In the society McCain and Palin wish to create, in which entitlement
programs like Medicaid and Social Security are further whittled down,
health insurance is more and more in the hands of private insurers, and
deregulation continues apace, the picture for disabled children and
their parents could only get worse. No matter what Palin might say
about her advocacy for "special needs" children, I have no doubt that
her right-wing, everyone-for-himself notions will prevail. I certainly
hope Palin and her husband have plenty of time to fill out forms and
make phone calls pleading Trig’s cause to petty administrators; anyone
with a disabled person in their family can tell you this is the
substance of our daily lives. Private insurers want to make as much
money and avoid any costs they can; they hate people like us, who have
what must seem to them like an endless need for such essential items as
wheelchairs, ventilator masks, home health aides, and psychological
services. So they spend all their time and money fighting us, rejecting
claims and having us call or email or get new verifications or asking
us multiple times if we have another insurer.  Every time my husband
has changed jobs—he is a physician himself—we have had to fill out new
forms, establish credentials, and deductibles, and re-explain Ansel’s
condition and needs—all things that would be obviated by a national,
single-payer system which Palin and McCain wholeheartedly reject.

Ansel, now 24 and a graduate student, eventually did come around to
the notion that he had some things in common with other disabled
individuals, including the very real barriers, concrete and social,
that they face. I can only hope that Sarah Palin, if she experiences
firsthand the endless waits in doctors’ offices, the emotional
heartache and the physical burdens of disability, and the minefield of
private medical insurance—and it’s a big "if" considering her hugely
ambitious public life—that she will reconsider her positions about
abortion, entitlement programs, and a single payer medical insurance
system. But considering where she is coming from, a mindset that won’t
allow doubt or flexibility and in which the phrase "Life begins at
conception" becomes some sort of hateful mantra rather than an
expression of love—I don’t feel hope but despair at the possibility of
Sarah Palin at the helm.

You might also be interested in this post, which quotes Penny Wolfson extensively, at the Mothers Who Write blog addressing the abortion debate; a previous Beacon Broadside post from Jane Bernstein about the challenges of raising her disabled daughter; and this New York Times article about the strain of rising medical costs. You can listen to an interview with Penny Wolfson on the Leonard Lopate show here, and you can learn more about muscular dystrophy at the website for Parent Project Muscular Dystrophy.