Tag: independence

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Living With A Disability

How do you, live with a disability? I think we live as any regular person lives, though a little differently.

I advanced my education after my car wreck. Instead of walking, I rolled to my classes. Later, I was hired as a speech and language pathologist in a school for special children. Due to the diversity of speech and language disorders, I scheduled much of my caseload in individual sessions, or as one-on-ones.

On a particular day, this seven year old, who didn’t want to be in school, decided his session was over. I saw it coming; he had previously used me as target practice with a metal toy truck (one of several vehicles) I was using to teach vocabulary for modes of transportation.

Seated across the table in front of me, he rose from his chair—wearing the face I knew so well—and backed across the room until he reached the wall, never once breaking eye contact with me or even acknowledging my request to return to his seat. Challenging me, he stood firm.

I backed from under the table and wheeled left toward its end. Before I could round the table to guide him back to his seat, he ran to the table’s right end. I backed up and headed toward the right end. He scurried back to the left, never taking his eyes off me.

I knew I could not win this stand-off. I rolled over to the intercom, buzzed the principal’s office, and requested his audience, by name. Instantaneously, David had a change of heart, breaking the sound barrier to get into his chair. After that incident, I was assigned an aide for a couple of my unruly students.

With this one exception, children have always shown a compassionate understanding of my disability. I never had children, but I sat for everyone else’s.
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When I requested that they not go upstairs, outside, or anywhere that I couldn’t be with them, they complied. Since I couldn’t pick them up, I taught them the two-step-climb up into my lap. This was a multi-purpose skill, not only for reading stories, or to love on them, but also to assist them onto my dining room table to change a dirty diaper. Yes, it’s a little unorthodox (I always sterilized the table surface afterward.), but the joy was the same, and the job was accomplished.

With children, here are two perks of having a parent, sibling, or friend, living with a disability. The first is: They can develop early language skills because we talk them through most developmental tasks, i.e., learning to dress, and give directions for performance abilities (keeping their rooms straight and floors clear of toys; if not, we can’t step over things to put them to bed.).

The second is: Their confidence and independence—doing things for themselves, and us—set them up for success, as well as nourishing a sensitivity and consideration for all others.

I think we do rather well living with a disability, thank you very much.

Remember, R.S.V.P.

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Wheelchair Exercise in Optimism

In a recent article “Disability’s Truth,” my intent was to defuse the seeming tension and uncertainty for the able-bodied person in being around a disabled individual; then I wondered, “Are we, the disabled, fostering the discomfort?”

It sounds trite to say that we are more alike than we are different, but it’s true. We are all living life with the cards we have been dealt, often shuffling and reshuffling—seeking better.

My introduction to the world of disability was my own rehabilitation. I was always optimistic, but in rehab I met some really negative, sour sojourners. Their negative energy was too heavy for me. After awhile, I began avoiding their space. They were still angry and blaming the world for their situation, expecting others to do everything for them. (I lingered a little long in the denial stage myself. Catch the five stages of grief in my “Wheelchair Derailment” article.) They completely missed the point of rehab; we were learning a new way of life in order to become as independent as possible.

Yes, it was hard. After struggling an-hour-and-a-half to dress each morning, I wanted to rest, but I was too hungry to miss breakfast. Creeping down the hall to the cafeteria took me another fifteen minutes. After breakfast, our OT and PT classes began. I took full advantage of our rest period after lunch; I took a recuperative nap! I am so thankful that I learned how to wheel a wheelchair (without ever breaking a toe from running into walls, furniture, and other people), dress and feed myself, and put on my own make-up. I wouldn’t be living independently and triumphantly now if I hadn’t.

So today, I am speaking to us: the disabled. Do we greet the world (and our loved ones) with a frown, assuming that “they” should make things easier for us, or with an optimistic smile believing that we can improve our lives? These facial muscles determine how we are perceived?”

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Think about it: Our body also responds to our frame of mind. No one is responsible for our well-being but oneself. Making excuses for our bad health and habits, low energy level, being disliked and avoided by family and estranged friends, or for a poor prognosis from our doctors, is not an option. Only we can change the stigma of “poor, pitiful, paralytic.” We must let go of the illusion of normalcy. (There is no such thing anyway; and forget convention.)

I understand pain and discomfort, and the precariousness of each outing. But, I don’t expect my friends, family, and community to change just because I experienced change. I bought a portable, extendable ramp for inaccessible terrain, call ahead to verify accessibility, plan outings and appointments around the weather, humbly request help prior to doctor and dentist appointments, wear earrings and dress stylishly when I go out, and greet others with a smile.

If I feel down, I call someone that might need encouragement or may just need to hear a friendly voice; BUT NOT TO COMPLAIN. That doesn’t mean that I don’t experience occasional insecurity; I just nip the doubt into do!

Let’s go for it—our potential, our purpose, our passion. We’re worth it! Optimism is contagious.

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The F-word

When I was nine, my younger sister asked my mother, “What does f*** mean?” Mother asked me to leave the room while she explained its meaning, but I listened. (Inquiring minds need to know.) That was the first time I had heard the word.

I have since read various postulations of its origin: An acronym for the King of England’s consent for a married couple to procreate, an acronym labeling a prosecuted prostitute, or an acronym for an unlawful, sexual attack. Most probably, it arrived in the 15th Century from the Dutch or Low German language, fully formed, and not from the swearing Irish.

Less sensational than this four-letter word’s questionable etymology, but equally misunderstood, is the F-word I’m talking about: Flexibility. It isn’t a vulgarity, although many consider it a dirty word.

Before my disability, I did things when I wanted, where I wanted, how I wanted, with whom I wanted, and because I wanted to. If I wanted to explore, I searched country roads to discover their secret destinations or strolled through secluded graveyards imagining the mysterious deaths. When I wanted to socialize, I gathered with friends, went shopping, danced and listened to music, or participated in sports. All of these are spontaneous freedoms. Once confined to a wheelchair, I had to learn to be flexible.

In living with a disability, I consider flexibility to be my lifeline.

Merriam-Webster defines lifeline as 1:“a line…used for saving or preserving life…to keep contact with a person…in a dangerous or potentially dangerous situation” and 2: “something regarded as indispensable for the maintaining…of life.” The way I see it, hired caregivers or family, friend, and neighbor volunteers are our lifelines assisting us in maintaining our health and preserving our quality of life.
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I live independently, but I happily anticipate the weekly and bi-monthly help from my girl Friday and housekeeper. (Learn about the village that keeps me independent in the “It’s a beautiful day in my neighborhood” chapter of my upcoming book Views From My Chariot: A Wheelchair Oddity.)

My “village” helps me with miscellaneous errands, grocery shopping, pet trips to the veterinarian, keeping a clean house, etc.; they sacrificially work me into their schedules. And yes, there are times that their availability interrupts my schedule. Beggars can’t be choosers. What is a little inconvenience when it is my needs (or wants) being met? For that matter, being flexible is a consideration of someone else.

Knowing that I am clay in His hands keeps me malleable. I can’t be broken if I am adaptable and pliable; and gratitude insures my flexibility.

Have you been rigid and staid in your time table? What are your thoughts on the F-word? (the one with eleven letters)