Bette Davis, the iconic movie star who played “Baby” in Whatever Happened to Baby Jane (a not-so-favorable movie portrayal of disability) once said, “Getting old ain’t for sissies.” One wonders if her movie role helped form that opinion.
Aging presents changes and challenges for all people. This is especially true for individuals with physical disabilities. Having been paralyzed at age 17 in 1975, I know this well. Whether born with a disability or having acquired one, we all learn how to work with our bodies’ limitations and adjust to our own lifestyles, schedules, routines, as well as patterns of need, assistance, and dependence on or not needing assistance from others.
People with disabilities have to recalibrate all of the above in sometime dramatic ways as our bodies show the strains of years, sometimes decades, of compensation and over-use. I read once the aging process is exacerbated 10 to 12 years for people living with long-term disabilities. I do not know if this is true. But fatigue, postural changes, arthritic shoulders, elbows, hips, pain, and spasticity (just to name a few) are common complications that can force folks to lose hard-earned independence and mobility.
Ambulators may transition to wheelchair use. Manual chair users may transition to power chairs. Transfers change from lateral hops to using a transfer board. Or board users start having skin problems and weakness, so they are forced to transition to a portable lift. We all have to readjust both physically and emotionally.
For me, the decision to go from manual chair to power was very difficult. I probably would have preserved my elbow joints had I done so sooner. But, I could not! My self-image as a manual chair user and all that implied was embedded. People in the disability community, like all groups in society, can have an unspoken strata system. Some manual chair users might imagine themselves “less disabled” than power chair users. Driving a car and hauling a chair independently was more acceptable and less stigmatizing to me than using a van (and much less expensive.) When I finally accepted the inevitable and transitioned to a power chair (still alternating between that and my manual,) I found a new freedom I had never experienced with my manual chair. As a C5-6 quad, I was not a strong pusher outdoors. The power chair opened me up to experiences that I never had as a wheeler. I started using public transportation, running several errands in a row, commuting to work in my power chair, not getting as angry when all the handicapped parking spots were full (a whole other blog article.) All of these things were functionally impossible during my 30-year “manual chair period” feeling, err… “less disabled.” It was transformative and, ironically, more enabling. All changes come with consequences, though. While my independence grew stronger, my overall strength and activity level has weakened in the ensuing 10 years. I rarely use my manual chair now.
After getting a power chair, I had to get a van and give up my car. This was another tough decision, but it had to be done in order to accommodate my power chair. I was really not ready for a minivan, again, because of my self-image. I had my emotional work cut out for me once again. I had to accept my changing level of need. However, like the power chair, the van offered several benefits. For instance, I no longer got soaked or froze during a transfer and chair breakdown process. That’s a big deal!
Everyone, physically disabled or not, has to adapt to changes, big and small, due to aging and their ever-changing body and physiology. Having a physical disability does add another layer to the aging process. This is part of the life cycle. As for me, I know that more changes will be needed as I get older and continue to ask a lot of my body. While it is difficult, I am trying to prepare for and honor these ongoing changes, rather than view them with dread, fear, or anxiety.
Guest author: Ruth Black, Peer Coordinator
To learn more about Peer Support at Magee, click here.
Photo: Ruth (left) meeting with with fellow Peer Coordinators