Redefining Disability Challenge Question 3, Part 2

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the third question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. I am a licensed professional who worked for nearly ten years in geriatric rehabilitation, so I approached this particular question from both the patient perspective and from my professional perspective. Last week I wrote as a patient; today I share from my experiences as a clinician.

What have your experiences with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

I never thought I would have a job or career in a medical field. When I was younger, I thought I would become a music teacher. I realized I was wrong during my first semester in college and spent the next year trying on various majors for size. When I sat in the first class of “Survey of the Nature of Communication Disorders” with Dr. Gary Jones, I knew instantly I was meant to be a speech-language pathologist (SLP). I was fascinated by words, language and human communication. Working as a SLP meant I could help people, which has always been important and rewarding to me, and be challenged by topics I find intriguing.

I was taught and mentored by some of the finest clinicians and professionals. My professors viewed me as competent, and stood by me when I encountered discrimination during one of my clinical practicum experiences. In classes, I learned about communication disabilities while I was coming to terms with my new identity as a wheelchair user. I was no longer able to walk after my third year of college. There I was, trying to develop skills to help my clients adjust to disability when I had yet to tackle my own feelings related to impairment and a changing body. Sr. Charleen Bloom, a wonderful professor who taught the seminar devoted to counseling skills for SLPs, knew I was holding back and tried to get me to open up to the class but I kept those emotions under lock and key. My studies exposed me to disabilities other than the motor impairments I knew so well, and were my entree into disability pride.

I assumed I would work in a school setting, as is the case for the majority of SLPs in the United States. My first day of student teaching in a public school cured me of that misconception. I worried for a year, uncertain what I would do with my degree, knowing I was not meant to work in a school with children. Then in the summer of 1995 I started my practicum with Joe at a local nursing home and I knew what I was meant to do. I loved the medical aspect of speech therapy! I enjoyed the diagnostic challenges, and felt purpose in my work. I was comfortable in health care settings, not bothered by disability, impairment or death. I spent the first ten years of my professional life working as a per diem SLP in nursing homes and rehabilitation centers. The company I worked for held contracts with several local facilities which gave me the opportunity to learn and work in a variety of settings.

As a professional who just happened to have a disability, I was able to connect with my clients in a way others could not. Often, I was the first peer mentor they encountered as they adjusted to disability. I was able to offer real world advice and experiences to prepare them for the transition home. The social workers did their best, but many families (even those not on my caseload) came to me to ask about services and options for community living.

My personal experiences with health care professionals who did not treat me with autonomy and respect meant I worked diligently to ensure my clients had input into their treatment plans as much as possible. I asked clients and/or family members about their goals, and did my best to design therapy sessions to meet them. I never took clients out of the beauty shop for therapy, and when the weather was nice I brought clients outside. Communication doesn’t happen in isolation, so I took advantage of everyday situations whenever I could.

At least once a week I was accused by someone – either a visitor, new resident or new staff – of being a nursing home resident. I wore a name tag clearly identifying my role, and was professionally dressed, yet for nearly ten years I had to justify my place as a staff member, not a resident. People assumed the wheelchair meant I lived in the institutions. One particularly bad day stands out in my memory. I had visited three facilities over the course of the day, which was stormy and wet. I was finally done with my last evaluation at 6:30 PM. Bundled up against the cold, I pushed my way through the very heavy (not automated) glass doors only to have a staff member come running up behind me and drag me back into the facility. Despite my protests, she was convinced I was a resident trying to “escape.” This was not an isolated event. I would enter staff break rooms to get coffee only to be told by staff who did not even bother to look up at me that residents were not permitted in the break room. I wish I could say I handled these interactions with grace and kindness. Unfortunately, my sarcasm often escaped before I remembered to keep my mouth shut.

I wasn’t the only wheelchair using professional who worked in these facilities. There was a Hospice nurse who also used a wheelchair. For months I wondered why the unit nurses always tried to hand me the Hospice charts. Then one day I was wheeling down the hallway and saw another woman, with dark  hair and glasses, wheeling towards me. We both started to laugh as we approached each other. “You must be Hospice,” I said. “And you must be Speech,” she replied. We decided it had to be the hair and glasses – why else would anyone confuse us?! From that day on, I had an ally and fellow advocate in the workplace. I learned so much from her example.

I left my job as a SLP for many reasons. But I have maintained my professional certification and my license. I worked hard for those credentials, and it is reassuring to know I have marketable skills should I ever need to seek employment. I can never really turn off the “speechie” part of my brain. I analyze accents and speech patterns, observe chewing and swallowing of those around me, and apply compensatory communication strategies in my own life on a daily basis. My disability has helped me focus on communication as the goal of treatment interactions, rather than ‘normal’ speech and language (whatever normal is). I am grateful to have personal experiences to guide me.

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8 thoughts on “Redefining Disability Challenge Question 3, Part 2

  1. I can’t believe I didn’t know this about you being forced back inside, just because you were in your chair. There is much to say about it but I hope in some small way, you were able to change the setting there for the better. Can you look back on some ot this now with humor?
    You are still the go to for many of us with rehab questions.

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    • Oh – there are plenty of moments I laugh about. Like the time I was carrying a lapful of things for me and the Occupational Therapist. She was pushing me, but let go of my chair at the top of the ramp to hold the door for someone. I kept flying down the ramp – with her quickly realizing what was happening and running after me 🙂

      I’m happy to answer rehab questions. It keeps my brain from getting rusty!

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  2. Denise, you amaze me. Really. You’re ability do push through being treated unfairly and your skills as an advocate encourage me. Although I am not yet in a wheelchair on a permanent basis, I have spent quite a bit of time in one. That’s another story for another day.
    I’ve also spent many months in facilities such as these. I don’t recall ever having a decent plan on release or one to advocate on my behalf while there. I’m sure you have been a gift to many!

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    • Melinda – now you have me! I am happy to help from a distance..

      Thank you for the compliment. We are stronger than we think we are – and sometimes challenges and difficult experiences prove to us just how much we have in our reserves.

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      • I’m happy to have you as a friend and will keep you in mind should I need advice.

        I agree with you. We are stronger than we think. Looking back on some of the things we’ve experienced I don’t know how we made it, but we did. And I’m certain we’re better for it and if nothing more much more compassionate.

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  3. Oh, and I have had both positive and negative experiences. Physical therapists always seemed to be helpful to me. And the “got it” more than doctors. I once had a doctor accuse me of wanting to stay in the hospital because I cried when he told me he was releasing me. I had bilateral injuries and had never even seen a therapist. There was no treatment plan, no equipment. I knew I couldn’t take care of myself without those things. It worked out but not without causing lingering emotional pain.

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    • I am sorry you had to experience that. Unfortunately, many of the rehab “professionals” don’t understand the day-to-day experience of life in the real world. When you find the medical professionals who do “get it” and treat you with respect, you have to maintain the relationship and be grateful.

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      • Yes, very true. It’s easy to forget that medical professionals are human. Although I must say that they’ve proven it to me time and time again. That has helped me though to realize that we are all in this together and if not, I need to find someone who has that attitude. 🙂
        It was actually my primary physician, at the time, who’d gotten burned out on my case I suppose. I left him and found another which was probably a blessing to both of us. Had I been in a rehab facility at that time it would have been to my advantage since I was obviously in need of therapy and durable medical good.
        The truth is sometimes people just don’t think. When that happens I try to make them think asking questions like “what would you do if it were your mother” (I’m a caregiver for my Mom) or “if it were your wife would would you do?” Sometimes it works, sometimes it doesn’t.
        You are so right when we find one who “gets it” it is a real blessing and I’m definitely grateful for those who have cared for me over the years who did so with respect and dignity.

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