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FARAFARA Cure FA

Diversity Among Wheelchair Users

 

Society's Profound Need to Recognize Diversity Among Wheelchair Users

In the past few years, since the combination of getting a degree in public health and dealing with my middle sister's and my FA becoming more and more progressed, I have been feeling an urgent need to recognize that simply using a wheelchair does not mean all wheelchair users are, in any way, equal. Here are my thoughts...

"Just as it is illogical to consider all mammals the same because they are warm-blooded, there is no logic in saying all people who use wheelchairs are alike merely because they must rely on wheels for mobility." I wrote this sentence for my thesis project, but thought it was very apropos here. Thus, to me, a wheelchair user for over twenty years, there is an aching need to recognize the diversity among wheelchair users. Although we all use the same type of wheeled assistive device for mobility, individual wheelchair users often possess diverse abilities and have highly unique, specialized physical needs, in addition to individual personality traits and cognitive and emotional responses. In other words, people who use wheelchairs are neither the same individual, nor are they necessarily paralyzed or impaired from only from the waist down; speech, manual, vision, hearing, skin sensations (i.e. tingling, buzzing, burning, or numbness), fatigue level, ability to sleep, and many other complicated physiological processes may be affected.  Robbi and her sisters, Becca (left) and Katie (center). Of course, these physical symptoms vary considerably by disease or condition and they may vary still further from one person to another. The overwhelming majority of people I meet tend to assume that because I look "normal," but use a wheelchair, I must have the typical symptoms of a person with paraplegia: full motor control, no hearing impairment, no difficulty articulating, and no fatigue. I want to scream out sometimes, "NO! I am NOT paraplegic!"

Moreover, individuals who use wheelchairs are just that--individuals. My sister, Becca, also has had FA for many years, and it is almost uncanny that our minds, personalities, and Robbi and her sisters, Becca (left) and Katie (center).bodies are so different. Same parents, same disease, but two very different people.

 

To Love Her

 

This is a poem I wrote for my middle sister, Becca, about her service dog, Kringle. She received him from Canine Assistants in 2007. He is a wonderful assistant and companion to her, and his only problem is that he tends to get carsick! Many people ask me if he helps me, too. My truthful answer is "No, not AT ALL!"

To Love Her Dedicated lovingly to Becca and Kringle

Every creature that is wise enough to obey the inner voice, The inner voice that calls and directs and points to the path Has a divine purpose, a reason to live I am uneducated, although I had excellent trainers, Nor am I a productive employee, working solely to earn a paycheck I am not a paid worker, at all My purpose is the only thing I know My purpose is to love her

Maybe her voice has been inside me all my life It must be so Because she is all I know I do not merely follow her as though I have no choice but to tag along Rather, I walk beside her Because I choose to follow the voice that leads me My purpose is to love her

Yes, I am the best at what I do I am even better at loving her than her people, most of the time I know this because she tells me so, when she gives me the praise I need I especially love waking up tangled with her When we are a gnarled mass of ivory limbs and golden coat I wake and rise as nature intended for me And I reluctantly wait for her to finish her sleep, feeling purposeless without her She is my soul mate, my partner My purpose is to love her

My only purpose with meaning is to love her. The VanSchoik Family The VanSchoik Family

 

Robbi

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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