As a woman who has been physically challenged all her life, I grew up with great support from my family, friends, therapists, physicians, and others who all guided me in my decision-making process and provided an extra hand in my daily living needs. However, as I transitioned into adulthood and moved to Indianapolis to pursue my career development, I began facing the realities of my disability alone and quickly learned new coping strategies to enhance my independence. Over the next few months, I have been given the opportunity to share my struggles and the ways I overcame them, especially in the areas of the physical, professional, personal, and perception.
When I first considered moving to Indianapolis and later a different side of the city, I began searching possible living accommodations. Despite the backing of the Americans with Disabilities Act, this proved to be more difficult than originally thought. For example, many apartment complexes either did not have a handicap accessible unit or made only a few modifications to get around the law. Specifically, several did not have grab bars in the bathroom nor lowered cabinets that I could reach. Further, they may have had handicap parking spaces, but few had enough room for me to lower the ramp on the passenger side of my van. Therefore, I promptly discovered that I had to check out the facilities myself and not rely on the information provided on the internet.
On another level, after a short time of living on my own, I acquired the motto: “Expect the unexpected.” In particular, when dressing myself, I use a sock-aid to put on my socks, and occasionally, it would break in the midst of this task. During another occasion, when preparing to drive to work, I went to my van only to find I could not get in due to the ramp door being frozen shut. Thus, since my parents were no longer available to physically assist me, I had to develop back-up plans, such as buying an additional set of adaptive devices and/or having friends and/or neighbors to call in emergencies.
Now, in regards to my medical needs relating directly to my disability, I sought advice and attention from various specialist who worked at Shriners’ Hospitals in different parts of the country. As an adult, I no longer could receive these services due to my age and quickly comprehended the complications of the medical world. Hence, when attending an appointment, I check-in, wait, am led to a private room, wait, am examined by the physician/nurse who usually has not heard of the term “arthrogryposis,” explain my diagnosis, realize that I probably will need a second opinion…the cycle continues. Thus, with all the waiting done here, how appropriate that the medical world uses term “patient!”
Overall, despite the plethora of struggles I have encountered regarding the physical aspects of my disability in adulthood, I have acquired three principles that have assisted me through various dilemmas. First, do the research. Use the internet as much as possible before exerting energy, time, and gas to check out the resources. Second, consult with previous support systems (i.e. physicians, therapists, specialists, etc.) that were helpful during your childhood, and ask their recommendations for options for adults facing similar challenges. Third, network with other adults with physical challenges, and ask them how they handle certain situations.