Today’s post is from Jane Bernstein, the author of five books, most recently Rachel in the World, a memoir of raising her developmentally disabled daughter. Her essay "Rachel at Work: Enclosed, a Mother’s Report" was included in I Love You to Pieces: Creative Writers on Raising a Child With Special Needs, edited by Suzanne Kamata. Bernstein is a professor of English and creative writing at Carnegie Mellon University and lives in Pittsburgh, PA.
As the mother of a young adult with mental retardation, nothing should make me happier than a candidate for vice president vowing that my daughter would at last have a "friend and advocate in the White House." Instead, I find myself more concerned than ever about the fate of children and adults with disabilities.
As most of us know by now, Sarah Palin’s fifth child has Down Syndrome. When Palin learned through genetic testing that her unborn baby would likely "face special challenges," she confessed that she "initially felt sad" but now that he was four months old felt "truly blessed."
Of course she loves her infant son. He’s an adorable little boy. It’s hard to find parents who don’t love their newborns –- even when we learn that our babies have disabilities. While for most of us, the grief we feel after hearing that our babies are less than perfect doesn’t abate as quickly as it did for Palin, it hardly matters, because when our tears dry, as eventually they do, what’s left is love and commitment.
I’d never known anyone with a disability of any kind before my
daughter Rachel was born twenty-four years ago, with a rare disorder
that resulted in intellectual disabilities, low vision, and other
developmental issues. This was in large part because I’d grown up in a
world in which those people were kept hidden – institutionalized, sent
away, often — as in the case of playwright Arthur Miller’s son
— expunged from the family’s history. For a long time, I wept for all
that Rachel would never be. I wept because of the way her birth would
impact her older sister and alter our family’s life. Despite my grief,
I loved my daughter – we all did. I was delighted by her, committed to
working with her, and determined to figure out who my inscrutable
daughter was so I could help her have a life that brought her pleasure.
I confess I was surprised by the fierceness of my love for Rachel just
as she was — and by my readiness to take on people or institutions –
anyone or anything that stood in her way. If I’d been the one standing
at the podium with millions watching when Rachel was four months old,
I, too, might have been fooled into thinking that my love was enough to
bring her a happy life.
It isn’t. Adorable babies with disabilities grow up. As is the case
with most kids, they are less adorable when they reach adolescence. No
longer are they poster children, snuggled in blankets, nestled in a
doting sibling’s arms. These children — who still get lumped under the
saccharine label "special needs" despite their broad range of
interests, temperaments and abilities — begin to need what their
typically developed peers can get without help. Friends. Learning
supports. Social activities. Vocational training. A chance to live how
and where they like. In our country, hundreds of thousands of young
people with disabilities cannot get the social services that would
enable them to satisfy these basic needs and experience ordinary
pleasures.
This part of the story – the part that spans years – is infrequently
told, perhaps because it isn’t as heartwarming or reassuring as a mother
proclaiming her unwavering love. In the US, thanks to cuts in Medicaid spending,
including substantial ones for the kinds of social services that would
help young adults with disabilities have satisfying lives, the lives of
these former special needs babies, whose parents also felt "unspeakable
joy" and believed they were" truly blessed" are often bleak.
My daughter Rachel grew into a gregarious young woman, with strong
desires she was rarely able to articulate and many ways of
demonstrating her frustration that I could no longer satisfy them. When
I tried to plan for her life after graduation, at which time all
entitlements abruptly end, the best I could do was put her name on a waiting list
with 20,000 others for mental retardation services such as housing. Nor
would it help to relocate, since then as now, forty-eight states had
waiting lists for the kinds of social services that would make it
possible for her to live independently.
According to the Coleman Report – State of the States in Developmental Disabilities 2008
– 991,144 individuals with developmental disabilities live with family
caregivers who are 41 to 59 years of age, 716,821 living with family
caregivers who are over sixty. Here’s another way to interpret these
figures: 1,707,965 disabled Americans, many lonely and unfulfilled,
languish at home with exhausted, aging caregivers.
Sarah Palin loves Trig. She is celebrated for making the choice to
have this baby, seen as courageous and noble. Already I have read of
another young woman, encouraged by Palin’s example, who made that same
choice. I would like to celebrate their decision the same way I would
like to be heartened by Palin’s words, because I believe that
disability is part of life. What Palin and her supporters fail to
understand is that babyhood passes in an instant. If Palin truly
believes that "every baby… has potential," she needs to spread the word
that in a democracy, we care for those who need support. We do that by
making sure that Medicaid funding is adequate and social services
available to all who need them. Republicans have consistently cut these
programs. This ticket, with Palin as vice president, has pledged to
reduce government spending, and thus continue these devastating cuts.
No "friend or advocate" for those with disabilities can make these
unconscionable pledges.
You can read more about Jane Bernstein and her daughter Rachel at www.janebernstein.net. View the trailer for Rachel Is, a documentary film about Rachel’s life by her sister, Charlotte Glynn, at the Jacktar Films website.
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