What Happens When Advocacy Never Ends?

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. I have learned to translate what I am told so that I can understand the real messages, messages that we who live with disabilities receive routinely.

While being escorted to an exam room for a DEXA scan, I’m asked, “Now, you’ll be able to get up on the table on your own, right?”  (Message: You don’t expect me to help you, right?)

After thanking the mammographer for her effort to get a good film, I’m told that I’m not too hard to film; “The real problem is those other women in wheelchairs who are obese and can’t move their torsos.” (Message: If you gain weight or your disability gets worse, don’t come here.)

On entering the room for an abdominal ultrasound, I advise the technician that the exam table is too high for me to transfer to safely. She asks, “Why did the doctor order this test if you can’t get up on the table?” (Message: Why do they even order these tests for people like you?)

After driving for an hour to report for an EMG of my hands, I’m asked to transfer myself to a high table for a test that doesn’t even require being on a table. When I politely decline, I’m told, “Well, I’m not sure that I can test you.” (Message:  If you won’t do what I say, why should I bother with you?)

During a visit with a specialist, the nurse asks for my weight. I ask to be weighed because I haven’t been recently. “Can you stand up?” When I respond negatively, the provider answers, “Our scale will not accommodate you”, and yet again, a fraudulent weight is recorded in my official health record.  (Message: It’s your problem you can’t stand up to be weighed. Just guess.)

Arriving for a renal ultrasound, I find that high table again–it haunts me. I request an accessible table and am told, “Oh, we do all of our wheelchair patients in their chairs.” (Message: This is good enough for people like you.)

Yes, the Americans with Disabilities Act has protected my rights for 30 years, and Section 504 of the Rehabilitation Act has covered access to health care programs and services even longer. In theory. But, still, I must be the broken record, the squeaky wheel, the bitch who’s never satisfied. I keep my tone polite but firm when I respond to both excuses for non-compliance with regulations and poor attitudes, expressed as:  We had no idea the accessible parking spaces were blocked, just check in over here, the supervisor is not available, just tell us what your weight is, that IS our ADA bathroom, you don’t need an accessible table, blah, blah, blah. The problems are clear but the avenues for remedy are opaque.

I’ve learned to go along to get along, to have the test done (however imperfectly), to get the report I need to care for my health, to preserve my sanity. Self-advocacy takes time, and my needs are immediate.

Still, afterward, I diligently advocate for the changes that are both legally required and necessary for people with disabilities – not just myself– to safely access care. I contact the parking department, the facility supervisor, the imaging director, the patient relations department, the CEO. I make calls, fill out forms, write letters. I send emails with copies of the ADA regulations attached. I join a hospital’s patient advisory council. I present to another hospital’s cultural competence committee. I file human rights complaints. I file a civil rights complaint.

In response, I am thanked, placated, humored, pacified, and typically, ignored. There is simply a lack of acknowledgement that providing health care to patients with disabilities demands a modification to “business as usual”. Change comes very slowly, if at all. For example, I complain in writing for several years about my annual renal scan being done in a seated position. Even when I advise that a radiologist—their own physician–includes a notation that his report is incomplete “due to the patient being scanned while seated,” my complaint is ignored.  Ten months later, I threaten to file a federal complaint and only then do I receive a message that they are “looking into” getting an ADA-approved adjustable-height table in time for my next scan. There is no indication that they will introduce system-wide compliance with the law and accessibility for all patients who need it, but just attention to my “special” needs.

Despite these obstacles, I persist in creating change for myself, for my friends and colleagues, for my community members, for people with disabilities who I don’t know, who struggle with the same issues and get the same responses, over and over and over. And I am keenly aware that as a white, cisgender, heterosexual woman with an advanced degree, a career, knowledge of my rights, and the ability to clearly articulate my needs, my battles are relatively mild compared to those faced by my disabled comrades who face discrimination due to identities—or the intersection of them—such as race, ethnicity, gender, sexual orientation, transgender status, poverty, -or disabilities that elicit even less respect than wheelchair users get.

I will not give up though. Just as we fought for the ADA and other legislation, I know we will eventually triumph. We will win on the global issues, like the right for all people with disabilities to live in our communities with needed supports, to work and earn a living wage, to have comprehensive health coverage, to parent, to recreate, to participate. And we will achieve what some people take for granted as the little things, like being heard, accessing equitable health care, and getting onto an exam table without risking a broken hip.

I am buoyed by efforts of researchers to create and promote guidelines for disability-competent health care; by my belief that regulations for accessible medical equipment, required to be issued under the Affordable Care Act but then rescinded, will be released and enforced; by failed efforts to disallow health care coverage for pre-existing conditions; and by the sheer determination of the disability community to create a world that allows us to live with dignity and quality of life.

But, right now, I am weary.

 

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Dot Nary, PhD, is a disability researcher and activist who advocates for universal, single-payer health care and has worked to make communities accessible to all for over 40 years.