Laura Hershey: Writer, Poet, Activist, Consultant Rotating Header Image

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Literature of Personal Assistance

Personal assistance services — hands-on help provided to support daily living — is an experience very familiar to disabled people, as well as to people who are elderly, ill, or recovering from injury. Yet it rarely shows up in literature.

When it does, it can offer fascinating insights into the dynamics involved in the exchange of what’s often called “care” or “caregiving.” A couple of years ago, I wrote an article analyzing two writers of creative nonfiction, Nancy Mairs and Paul Monette, who wrote about giving and receiving personal assistance to a loved one. That article has just been published in the online literary journal The Sylvan Echo. You can read it here.

I’m always interested in reading (and writing) literary descriptions of personal assistance. Let me know if you find other good examples.

Cheney’s Villainy — Nothing to Do with His Wheelchair

I never thought I’d be sticking up for Dick Cheney. But his appearance at the Inauguration today, riding in a wheelchair pushed by several Marines, has elicited so many nasty, disabiliphobic comments, that I find myself… well, not exactly defending Cheney, but at least defending the dignity of wheelchair use.

Cheney apparently pulled a back muscle, and has to stay off his feet for a few days. Granted, with his clunky chair and his scowling countenance, he’s not exactly the model of the hip, sexy crip. Too many commentators, however, have turned the wheelchair into a mark of shame. MSNBC’s Chris Matthews said, “The Vice President in that wheelchair… is a metaphor for the low esteem with which he’s held in this country. His numbers are pathetically low.” (Is Matthews aware of the fact that President Franklin D. Roosevelt, one of the most effective and most popular presidents, governed from a wheelchair?)

Around the Internet, I’ve seen numerous gleeful references to the image of Cheney in a wheelchair. Several compared him to Dr. Strangelove, the maniacal nuclear scientist in Stanley Kubrick’s film. Others invoke Mr. Potter, that mean old banker in Frank Capra’s It’s a Wonderful Life.

We don’t need another villain in a wheelchair. A villain he may be, with shared responsibility for torture, repression, and all kinds of other crimes against humanity. But the wheelchair has nothing to do with it.

The End of an Era

van_byebye-004Today I said goodbye to an old friend: my 1994 Ford Econoline van, in all its Tobago green glory. I called last week to arrange to donate it to my local public radio station, and it was picked up this morning by tow truck. Once it’s sold at auction, I’ll get a tax deduction. I’ll also avoid sinking any more money into hopeless repairs.

The engine was shot, but I might have kept it if not for the latest problem it developed. A cable essential to the operation of the wheelchair lift snapped in two, and it’s an old brand (Ricon) for which replacement parts are no longer available. Since the end of the tax year was fast approaching, I made the decision to let the van go.

That van was important to me for several reasons. It was the first vehicle I bought with my own hard-earned money — as well as the hard-earned knowledge about how to do so, using a Social Security “work incentive” program called Plan to Achieve Self-Support (PASS). Under my PASS, I was able to keep my SSI and Medicaid benefits while working. By spending some of my earned income on car payments, I was able to “set aside” that income, so it was not counted in determining my eligibility for benefits. By purchasing the van, I not only got a vehicle I needed — I also launched what would become a fairly successful consulting career, without losing essential health care coverage. I was able to use the van to get to meetings, presentations, and other professional destinations.

In addition, during the past decade and a half, the van also carried me, my partner, attendants and friends on some weird and wonderful journeys. We drove it to Jefferson City, Missouri, in 1998, to teach self-advocacy skills and independent living history to a Partners in Policymaking group. In 1999, we drove all the way to Louisville, Kentucky, to meet with disability movement leaders for a strategic discussion of media messages and images.

In 2004, Robin and I took a carefree vacation on the coast of Oregon, along with my family and several friends. Unexpectedly and very sadly, we learned that a dear friend of ours, Tanis Doe, had died at her home in Victoria, BC. We traveled up through the northwestern US and into Canada, and spent a week helping to organize Tanis’ memorial service and some of her other affairs. Although I was grieving, I also felt very fortunate that we had both the mobility — in the form of my trusty Ford van — and the support of a team of attendants, to be able to go bid farewell to Tanis in such a meaningful way.

Now, for a while, Robin and I will be a one-car family. That should work, as long as her Dodge Caravan can carry on. I’ll miss my van, but will honor the role it played in my life of work, mobility, friendship, independence, and adventure.