Until we with disabilities are treated well in the medical system, we can expect our civil rights to be limited. How can we expect others to treat us better than the medical system does? We need a true surge of support from the medical community for our personal rights as well as our civil rights; I believe that increasing respect in this environment will lead to increasing respect from others who will observe and learn from the medical community. I list a few suggestions here, which are meant to include insurance companies and assistive personnel, not just physicians. Please feel free to add your own ideas in the comments:
1. Better access to and funding of wheelchairs, with proper seating evaluations. Even those of us who have a proper wheelchair now need to look forward--insurance may not cover your next chair, and you may not be able to afford it. People need wheelchairs for access to their communities and to carry out ADLs long before they're 100% bedridden. Lack of wheelchairs can put people on disability, removing them from the workforce as they approach but are not yet completely bedridden without one. Lack of wheelchairs can lead to medical complications, make people less active, contribute to depression and lower someone's quality of life. Physicians should be better educated about the process too; it's not their fault that they don't know.
2. Acceptance of people who are in wheelchairs and the value of their lives. People adjust to using wheelchairs, so assumptions shouldn't be made about quality of life. Even for the most active person, new pursuits or different ways of achieving them can be found. Office spaces from waiting rooms to exam rooms to hold rooms for surgeries should be fully accessible (doorways too). More height-adjustable tables are needed.
3. Better protection of medical privacy. No blanket consent forms for hospital or surgery admissions that do not allow patients to "opt out" of medical photographs or videos as a condition of admission. It's unacceptable to ask questions in waiting areas or hallways, to dictate medical records in the hallway.
4. Kindness. Patients do not get sick to aggravate you. One set of nurses sent me a sweet card after surgery, while a nurse after another surgery clearly considered my husband and me to be aggravations, though I needed very little. One person at my insurer's call center always treats me with kindness, while another does not--I have to wonder if the latter woman is not unkind to people dealing with very serious prognoses.
5. An understanding that "noncompliant" patients may be noncompliant not from self-destructiveness but from severe financial difficulties, lack of transportation or help with transportation, or an unwillingness to deal with severe adverse effects that create more symptoms than they mitigate.
6. More teaching of medical narratives and medical history in medical schools and through continuing education programs. The medical system can be terribly objectifying. Just as patients may better comply if they understand the reasons for a physician's recommendation, physicians may better undertand patient perspectives if they know their reasons and stories. Many of the best and most compassionate physicians have themselves experienced illness--let's learn from one another.
7. Alternative and complementary medicine must stop treating people with disabilities as failures and regard them as normal. Humans are not machines--disability and illness are part of normal human condition. Safeguards must be put in place to stop unproven remedies and therapies that can have serious side effects; currently alternative medicine takes advantage of people's desperation. And rather than dismiss these modalities, the medical establishment can further fund research on therapies that hold promise and help integrate them into regular medical practice where they do work. Just as physicians now recommend acidophilus to help protect stomachs and cranberry tablets to acidify the urine to reduce infections, they should also incorporate other inexpensive preventatives when this is possible. While pharmaceutical company representatives do a lot of physician education about new antimicrobials, no one will come visiting to recommend acidophilus-cranberry regimens. If your patient can eat coconut macaroons to stop irritable bowel syndrome (as recommended by The People's Pharmacy), then she, her insurance, and her employer all save money and treatment with more serious side effects.
Living with a disability can be truly difficult--and often it's not the disability itself that's the problem so much as the baggage that goes with it. Stressors include dealing with insurance, trying to get adaptive equipment or appropriate transportation, managing accomodations at work or doing without a job, needing more physical or household assistance than is available, not being able to accomplish as much in the same timeframe as before, trying to manage in apartments or homes that are not fully modified, strained family relationships, judgment from others. When disability is new or when chronic illness has just reached the level of disability, it can take a while to adjust and the change can be temporarily overwhelming. Compassion and noncondescension during this process is always appreciated.
The medical system, definitely the physician office, should be emotionally safer than it often is, so that people with disabilities feel more support there and less opposition. While I feel fairly fortunate, I know that others are discredited or denigrated or left untreated for treatable conditions. This is shameful.