Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee



Pam (56), Muscular dystrophy, Davidson County


"Like many of us, Pam’s independence is the most important thing to her. "

  • A Student interview of self-advocate's Perspective
  • Posted on 2/25/2013

 

Pam was diagnosed with muscular dystrophy twenty years ago and mobility continues to be one of her biggest challenges. While she feels that the city of Nashville has made great efforts to accommodate the needs of individuals who use wheelchairs, she says there is still a lot more that needs to be done. Successes include more accessible seating in churches and in airports and on airplanes. She highlighted movie theaters, in particular, for their seating improvements. She also mentioned that some cruise lines, one of her favorite ways to vacation, have made great strides in becoming wheelchair friendly.

However, she has not seen as much progress in the accessibility of bathrooms. Specifically, hotel bathrooms, and hotel rooms in general, are not large enough to accommodate her wheelchair. In typical bathrooms, the toilet is often right beside the shower, which does not allow for enough room for her to move around comfortably. The type of shower in the bathroom can also be problematic. Some showers have built-in tubs, causing one to have to take a step up to get into the shower. Other showers can be walked into, but are often only built to fit a person.  Again, this does not allow enough room for her and her wheelchair. She has had the best experiences with roll-in showers that are specially created for people who use wheelchairs; however they do not have a lip to collect water, causing water to spray everywhere. 

Similarly, she expresses that finding a house can be a difficult process as well.  Houses are not typically designed for people with disabilities. They have to be built to fit their specific needs. Pam modified her house with large hallways so that she can stay in her wheelchair and move around comfortably throughout the house. In general, people with disabilities do not have the luxury of just buying a house as is.

Pam has been very involved with advocacy and support groups for people with disabilities.  She keeps a busy work and volunteer schedule. Currently, she works for the state. Her employer has been very accommodating. Automatic doors have been added to the bathroom and other office rooms, and they have also added special chairs for her. There was a point in her career when she was unable to type because of her muscular dystrophy, and her employer brought in speaking devices to help her with her work.

In addition to being very involved professionally, Pam has a very active personal life. She loves to write poetry. The poems started off as personal experiences—anecdotes about things that she has encountered with her disability. In recent years, she has also become an associate minister at a local church. She is currently in the process of writing a book. The book is mainly about her service dog that recently passed away, named Astro.

Like many of us, Pam’s independence is the most important thing to her. As an adult, she wants to be independent and able to take care of herself. She does not want to be a seen as a burden on anyone. She would much rather not get something done than beg for someone to help her do it. She is very appreciative of her sister; however, she still does not like the idea of depending on anyone, even friends or family.

From our talk with Pam, we learned a lot about muscular dystrophy, but most importantly, we got the pleasure of meeting an amazing person. 

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