Tagged with: accessible Cerebral Palsy coach disability exercise fitness goals health Healthcare Professionals Physical Activity
My self-reliance was continuously fostered and encouraged. I grew up with a “Do it yourself” mentality. Now every action that I perform, regardless of the circumstance, is a mark and strong assertion of my independence compared to having to depend on others. The seven years of effort that I have invested to walk without devices is driven by a concentrated desire for total independence. I want complete freedom and control over the way I move. I go into every training session with the same level of drive and a mind-set to “Get it done”.
Each session, the task is different. Yet the reactions my body has to new techniques or new approaches are intense. Reactions have rapid onset and I am likely to lose control over how my body responds. When a muscle that has not been used in my legs is triggered to react, one side of my body may start to spasm or go into clonus (involuntary contractions) due to my Spastic Cerebral Palsy. After the spasms subside, if I try to stand, my legs will be wobbly and my balance will be unsteady.
When I experienced the clonus for the first time, it was unnerving. I had never felt the repeated intense contractions before. I struggled with how to appropriately assess and contain the reaction. I watched my Movement Specialist, James, question whether he should leave me alone or intervene. I had just completed an intense training session under his supervision.
I had clonus set in on the right side of my body. When I was finally able to stand, I struggled to grip my walking poles because of the contractions. I had to gather my belongings and put on my coat. The world slowed down a couple of beats when I watched James move toward me. When I heard the words he said, the world sped up again. “Do you want me to button your coat?”
The first thought I had was, “I learned how to button my coat 32 years ago.” I felt my shaking arm rise unsteadily up in a defensive move. I heard my own voice rebuke the offer of help. “I am not five.” My brain clicked back to real-time and I processed what just occurred. “Thank you, I can button my coat.”
The concept of other people helping me is a challenging one. What is the line or boundary between helping, caretaking, and paternalism?
James has certain professional responsibilities that he must abide by, and protecting me from injury is one of his core obligations. He will intervene if I am at risk of being injured. I am relying on his knowledge to carry my walking goals forward. In turn, he understands and respects that my independence is central to my efforts. He knows that I am trying to learn the skills I need to move under my own power.
I think a better concept for discussion in a working alliance between a client and a professional is accommodation over helping. By definition, accommodation is providing the appropriate level of aid to give a person their independence. James and I both had to define what accommodation meant and in what circumstance. James and I have a mutual respect between us concerning our abilities and values. We believe in what the other is trying to do.
I respect James’s use of process and he will respect and support my philosophy of independence where and as much as he can. He will not intervene unless I specifically ask or express the need for help. His respect of my independence is afforded to me in quiet ways.
My Movement Specialist truly listens and he will always ask my wishes. “May I?” is a question that not enough professionals ask. He has learned what many of us need to learn and re-learn. We cannot talk and listen at the same time. His timing is deliberate. He is quite effective at putting himself in “my shoes,” showing respect for my unique goals and priorities and finding ways to truly accommodate them.
I asked James to afford me independence wherever I could have it. During this particular session, I did not have full control of my balance but I was able to button my own coat, even if it was with shaky hands. James let me button my own coat, accommodating my objectives of independence.