Real, Vibrant and Not-to-be-Ignored

2015 marked the 40^th anniversary of the Education for All Handicapped Children Act (EHA), landmark federal civil rights legislation that allows kids with disabilities to sit in school desks alongside non-disabled students. Before 1975, the U.S. was a nation in which the educational needs of eight million “handicapped children” were not being met, with one million such children excluded entirely from the public school system.

The most severely disabled children were forbidden by law to pass through the schoolhouse doors. Among the other seven million, most attended segregated schools with very rudimentary curricula or were sequestered within segregated classrooms. Most were tasked with just busy work and training for menial jobs.

Like the Sex Pistols sang in “God Save the Queen”: No future, no future, no future for you.

The EHA later evolved into the Individuals with Disabilities Education Act (IDEA), which defines kids eligible for services as those who have “a disability that adversely affects academic performance.” Of the eight million children mentioned in the EHA, it’s likely that many had orthopedic that didn’t impair the ability to learn but pushed them into segregated settings. Today, approximately 95 percent of kids with disabilities are attending regular public schools. About two-thirds pass school days alongside their non-disabled peers.

But don’t uncork the champagne just yet.

While U.S. law creates a framework for an integrated setting, good intentions don’t always add up to a meaningful education. Parents, students, school administrators and teachers must still shape a free appropriate public education in the least restrictive environment.

Intrigued?  Check out Pentimento magazine at: http://www.pentimentomag.org/issue-6-toc

My non-fiction memoir piece, “Crip Cargo,” appears in the current issue of this literary magazine for the disability community. An accessible, balanced platform where a piece about a promising future can sit next to a glimpse into a bleaker reality. Readers look together into the dark and the light and connect to both. To see and see again. To see beyond disability.

Don’t expect the usual mass media-crafted tropes of super-crip, inspirational gimp or pathetic victim. The pieces relate indignities, triumphs, and moments of silent or not-so-silent joy. At the heart of any education lies communication. Telling our stories makes us real, vibrant and not-to-be-ignored.

To the Caregivers I’ve Known

Being cared for by others over your life should be a reverse bell curve. You start out requiring a lot of help, gradually need less and less, live decades independently, then your needs return toward life’s end.

Once upon a time, I was in lock step with this blueprint of how we insist normal life should be. I was an eight-year old who rode a bike and climbed trees, a healthy third-grader who had mastered most personal care chores. Then rheumatoid arthritis fell from the sky like a white-hot shower of napalm. In a matter of months, dressing and grooming and cutting up food became monumental tasks. From then on, I have had to depend on caregivers for many simple and highly personal tasks.

I have had many caregivers thus far in life: a few dedicated family members who have done it for free and the vast majority who have been paid for their services. Sometimes family helps out of love and other times – let’s be honest – out of moral obligation. We then assume that the ones who get paid see dollars as their goal when sometimes they also stick around for the personal connection. They develop something of an emotional investment in the client.

Much has been studied and written about the burdens of caregiving for disabled offspring or how the sandwich generation are ground down to a nub by their obligations towards both kids and elders. All of it is valid and worthy of discussion. But what about the recipients of care, especially us adults who are supposed to be able to wash our own hair and pare our own nails?

When I was a teenager, I felt especially self-conscious. I was less concerned about needing help than I was sensitive to my personal appearance. I passively accepted my gimpdom but felt embarrassed to get naked in front of strangers.

When I started college at 17, I hired my first personal care attendant. I was anxious about the arrangement. Could I depend on her to get me up and ready so I wouldn’t miss my van ride to class? We quickly built a relationship of trust. I soon felt a bond with Lexie, the punk poetess who would be my caregiver and roll model throughout my four years of undergrad.

One time, Lexie was stricken with a devastating flu and bout of laryngitis. She was much too sick to work, so I temporarily hired an attendant already employed by another girl in my dorm. The sub was pleasant and punctual and resembled Dick Butkus in bibbed overalls. She’d never heard of Captain Sensible nor seen I Am Curious (Yellow.) I soon developed an irrational dislike for the poor woman though I tried not to show it. I deeply missed Lexie and fretted about her health.

Finally, after two weeks, my door swung open one morning.

“Dale Bozzio has a camel toe!” cried Lexie.

I thanked God Lexie – Sally Bowles to my Heidi of the Swiss Alps -- had been returned to me in fine fettle.

Lexie was always dependable, but other paid caregivers were not. As I got older, I realized I would much rather have an inexperienced attendant who is reliable, personable and shows initiative than an experienced one who is always late or I can’t bond with.

Family caregivers can be wonderful because of the memories and private jokes you share. If they love and accept you, all the better. But I have always felt a greater indebtedness to family members than those I pay. That indebtedness can eat at your heart.

A loved one can hug me and tell me I’m not a burden, but the truth is, I sometimes feel like one. I love the concept of respite care but I also feel a sense of shame that it’s needed in the first place. Truth is, the simple tasks of my daily existence can weigh down those dear to me, can pull them down into depression and exhaustion. That can be very tough to live with.

Perhaps we could take a page from the book of countries who are – gasp! – a tad more democratic socialist. Places where tax dollars fund basic attendant care for folks with disabilities so the need for respite care never arises.

Once we accept disability is often a natural and expected part of the human condition, then maybe we can forge a society that cares for all.