Month: September 2016

Always such a privilege and joy to welcome guest writers to “Hearing Elmo”… especially those who have made an impact on my own life! Ruth’s blog can be found at: http://foxbuds.com/default.html  

Succeeding at being functional, in spite of major disability, requires acceptance, attitude control, and accommodation. For approximately a half year, the extreme energy challenges that defines my disability took a vacation. I went from using a wheelchair to walking a mile independently. My wheelchair was actually forgotten, and it sat unused for several weeks. Feeling so energized, I worked to increase independence and exercise. Walking in a nature park; to and from the mailbox (long city block of considerable elevation grade); to and from study groups and services at church; and during shopping became frequent occurrences. Even bi-weekly lap swimming was added to the exercise mix. Restricted time limits on activity seemed to have dissolved. I came to expect unlimited energy and endurance.

Then, as quickly as it arrived, my disability “vacation” was over. Independence and exercise became challenging; fatigue and weakness unmerciful. Within a couple of hours after awakening, my day’s energy supply was gone. Being stubborn, I let failure define my course of action. Signs of exhaustion were ignored, functioning became extremely challenging and “mito crashes” began to occur frequently. During these mito crashes, I have trouble thinking and focusing; my speech sometimes slurs; word recall fails resulting in multiple unfinished sentences; there are unexpected falls when walking; muscles feel like they are made of wet cement; sitting up is painful as gravity alone is too heavy; my heart pounds and beats become irregular; and even breathing takes effort. My unwillingness to respect my body’s inability to produce needed energy, resulted in an unnecessarily low quality of life.

To find any degree of functionality, I first had to let go of stubbornness, pride and the perception that my disability would become a focus for those around me. It is uncomfortable when people express sympathy, or question my use of accommodations again, particularly my wheelchair. Yet, when I was finally forced to go back to using my wheelchair, which is the most visible accommodation that I use, people paid very little attention to it. Everyone around me was used to seeing me in a wheelchair, it just had been a while since they had seen it. As trivial as it may seem, it wasn’t much different than people failing to notice a haircut, or new glasses.

The hardest part of a disability is figuring out which accommodations give you the greatest amount of functionality. In this day and age of high technology, canine assistance, and ADA accommodations, it is amazing the level of functionality one can reach regardless of how severe the disability. Today, a person with hearing loss/deafness has so many choices that they can make to communicate at a distance, turn speech into text, or become aware of changes in their immediate environment; a person with vision impairment/blindness has choices that
they can use to replace print, locate navigational barriers, and obtain independent transportation; for a person with a mobility impairment there is considerable access to public and even private buildings, and accessible transportation; a person with a medical disability such as diabetes, epilepsy, or compromised respiration has options of implantable medication delivery, service animals that can predict impending medical crisis, and portable treatment equipment. It is true that barriers aren’t completely eliminated by accommodation, however it is a rare person that isn’t “barrier challenged” in some way, even without a specific disability diagnosis. Technology and access will slowly, but surely, improve over time.

Accommodating my disability this time around, was easier. Everything I need for my disability barriers is already in place; I just have to use it. Also having an extremely creative and supportive husband, who is so willing to do whatever is needed to help reach an acceptable quality of life, is a huge benefit as a disability affects everyone; it’s a family affair. All that was needed was for me to stop fighting against declining energy and to start working to make the best use of the limited energy I had left.

A person with disability can accept their personal limitations and find appropriate accommodations, yet not be successful due to attitude. Anger, bitterness, and continuous frustration over the limitations of public disability access is the fastest route to an attitude of entitlement. This is a personality disability; as limiting as any physical disability. It becomes a barrier to self-advocating. It prevents a person with disability from being part of the solution, by sharing what works, as well as what doesn’t work. An entitled personality is counterproductive to legislation, research, and development of new options, as frustration and anger slows the process down. An entitlement attitude keeps a person from finding or accepting alternate ways to bridge specific barriers.

My goal is to express gratitude for every barrier that is reduced or removed, and find my own solutions when I can. Yes, frustration gets the best of me sometimes, but as with everyone else, I am a work in process.