What Happens When Advocacy Never Ends?

By Dot Nary, PhD: For Complete Post, Click Here…

I am weary.

Of calling and emailing. Of educating and advocating. Of meeting and presenting. Of filing complaints. Of not being heard.

It’s not living with a disability that exhausts me. I have learned to live well with spina bifida—even to thrive. I am adept at balancing a career, chronic health issues, community advocacy, and having a life. My support system includes a wonderful husband, family, friends, and colleagues.  I have honed my advocacy skills; I know when to take on a battle and when to focus on the war. I have worked to make my community accessible for all, and to be the kind of place I want to grow old in. Life is good.

But I am a captive of health care providers and systems that purport to care for my health but not enough to provide accessible care. As the inhabitant of an aging body, I use my personal expertise to keep it functioning. However, it also requires the support of multiple specialists—strokes, pressure ulcers, incontinence, osteoporosis, and a dislocated hip have taken their toll. So, I faithfully attend medical appointments, although my typical optimism and faith that the system will respond to my needs is challenged by a repetitious stream of oppressive events, including:

The parking garage where Every. Single. Accessible. Parking space on one level is cordoned off and unusable, creating an obstacle that is illegal under the Americans with Disabilities Act (ADA).  I find two empty spaces, park diagonally, and let my wheelchair ramp down, but I risk getting backed into by drivers who may not see me as I wheel the distance to the exit. Drivers aren’t looking for my lowered profile.

The path to the medical building that lacks a curb ramp, illegally, and forces me to wheel directly into oncoming traffic to reach the entrance.

The legally required lowered reception counter covered with an unstaffed computer, papers, and other catch-all items. “Come around to this side,” they say, directing me to a high counter that makes me feel like a child begging for attention.

The restroom labeled accessible but with a huge, illegal vanity counter that blocks a safe transfer from my wheelchair to the toilet and creates a serious fall hazard.

The crowded waiting area where I cannot sit without blocking the aisle.

Then it’s time to enter the treatment room.

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