Bonnie Sherr Klein – Disabilities and Disadvantage. [PDF]
- Disability is intersectional, affecting poor and isolated people the most, further preventing their participation in society.
- Privileged people with disabilities, on the other hand, can live a full, productive life, modelling that disability, when supported, is but one aspect of what it is to be human.
Disability may be not only physical, including sensory, for instance blindness and deafness, but intellectual or developmental and psychiatric or mental health (Ontario Human Rights Commission 2011; Rick Hansen Foundation 2015). Each of these disabilities can be visible or invisible, have specific needs and often confound health care providers. The word `disability’ can be contested, as can the concept of normality. People with disabilities form a large category within other underserved and marginalized populations; they can overlap with many other categories to create double or triple jeopardy.
World-wide over a billion people, about 15% of the world’s population are estimated to live with some form of disability. 110 to 190 million (2.2-3.8%) of people 15 years and older have significant difficulties in functioning. Rates of disability are increasing, in part due to aging populations and an increase in chronic health conditions(World Health Organization 2014). Canadian data is similar; recent estimates from 2006 were that 4.4 million (14.3%), or one in seven Canadians had a disability and this rises with age (Employment and Social Development Canada 2012; Human Resources and Skills Development Canada 2011).
Because of their disabilities, people with disabilities are more likely to be unemployed, and poor, in comparison to other segments of the population (Human Resources and Skills Development Canada 2011; Statistics Canada 2013). They are more likely than the general population to be isolated, live alone, be homeless, be abused – particularly as women, and to be addicted to substances, often because of their need for pain medication. They are also less likely to receive basic anticipatory preventive measures and screening procedures such as PAP smears and mammograms than the general population.
My personal experience with disability following a life-threatening brain-stem stroke is hugely untypical, and perhaps worth writing about because of its exceptionality.
I was a healthy 46-year old, at the height of my professional life as a documentary filmmaker at the National Film Board of Canada’s Studio D, where I made films about social change from a feminist perspective (my most infamous film was Not a Love Story: a Film about Pornography). I was, and am, married to Michael Klein, a family physician head of a department of family practice, giving me access to specialists and treatment not easily available to others. At the time of my stroke in 1987, our children were 17-year-old Naomi and 19 year-old Seth.
We were on an athletic family vacation when suddenly I became nauseous and dizzy. Michael recognized my symptoms early as located in the brain-stem with the potential of leading to respiratory arrest. He rapidly brought me to a hospital where he was Chair of Family Medicine and stood by me to advocate every step of the way. Several times we experienced an incorrect diagnosis and inappropriately negative prognostication. Believing that my condition was inoperable and likely terminal, in spite of my husband’s “connections”, his colleagues refused to arrange for the necessary diagnosis and treatment. Though asked on several occasions to be the husband and let various doctors be the doctor, Michael questioned and challenged every decision, if necessary interfering, (“if you would be the doctor, I could be the husband”) finally obtaining innovative, life-saving surgery in another province.
I experienced several months of ICU stay in Ontario and Quebec, followed by several more in a rehabilitation institute, and then several more years in intensive outpatient rehabilitation. All of this was covered by Medicare; our only cost being the TV rental. Because of our socio-economic status, we were able to reach out for valuable complementary modalities like acupuncture, massage, Feldenkrais, often all at the same time (who cares which one is causing the benefit), much of which was questioned by skeptical mainstream medical professionals. Costs for these essential modalities were only partially covered by our extended medical care.
Like other people with mobility impairments, I was housebound for the six winter months in cold snowy Montreal, a beautiful but inaccessible city, with no transportation for disabled people and no opportunities for spontaneous or independent movement. Again, I was lucky enough to move to Vancouver, the most accessible city in Canada with accessible building by-laws and accessible transportation, including sufficient numbers of accessible taxicabs, a rarity in most Canadian cities. Surely, access is a determinant of health for people with disabilities.
With the support of Michael and our family, professional colleagues, and friends I was able gradually to resume a productive life as a writer, broadcaster and filmmaker as well as an advocate for disability rights. Disability can stress or strengthen relationships; we had a few relationship casualties, as some friends and even one family member just found disability too much or hit too close to home for our relationships to continue. But in this department there were many more validations of the power of family and community. Our kids Seth and Naomi became even closer to us and matured because of the disability experience.
My most valuable learning is that `independence’ is a precarious value at best; interdependence is more realistic and in fact more life-affirming. I learned that by asking for the help that I need, I am giving others the opportunity to be their best selves.
I have been able to write a book (Klein B. 1997a) about my experience, and ultimately a film about Disability Art (Klein B. 2006) Michael has written an article from his point of view as physician and husband (Klein M. 1997 b))
Before my stroke, I had little or no exposure to people living with disabilities. I had no role models. The hardest part of my experience was not being locked-in without speech, not the ICU psychosis, not becoming quadriplegic and respiratory-dependent, not re-learning how to swallow, talk, walk (with canes and a walker for short distances, a scooter for outdoors) but it was being discharged from hospital and trying to resume a`normal’ life, while being confronted with the invisibility of people with disabilities due to an inaccessible environment, both physical barriers, and attitudinal ones.
While going through my own journey, I met many other people with disabilities who were not so privileged or lucky as I. My roommates in hospital and rehab were mostly poor, depressed and isolated. They had little or no support. When I meet people from other countries through my work in disability rights, I see how fortunate we are in Canada with our universal public healthcare, whatever its limitations. Folks with similar conditions to mine do not have access to the rehabilitation therapies, assistive equipment, and technology which make my life so positive. We must struggle to preserve and improve what we have, as we extend it to all underserved and difficult-to-serve populations.
Many health care professionals may be unaware of the physical barriers of inaccessible housing, transportation, employment, etc, or the absence of sign language for people with hearing impairments. People with physical disabilities often cannot open the door to health facilities, or mount examining tables or screening machinery like mammograms. Access to personal attendants, therapeutic services, and specialized equipment and technology to support people with significant disabilities is inconsistent and often fraught with layers of bureaucracy. Vulnerable people and their families without appropriate supports may experience abuse or so-called `mercy killing,’ an issue which has become highlighted by the Supreme Court of Canada decision in favour of physician-supported suicide, an issue that is of great concern to the disabled community, turning around the individual issue of “what is a life worth living.”. Thus, some profoundly disabled people find their lives of great wonder and fulfillment, while objectively others with apparently much less disability find life intolerable.
Health professionals can help remove barriers – physical, attitudinal or systemic, facilitating the full participation for those with disabilities in daily life. Take time, listen, help ease two way communication and remove physical barriers when possible, and advocate for your patients within the system.
Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD) reinforces the right of persons with disabilities to attain the highest standard of health care, without discrimination (WHO 2014; United Nations 2006). In the US, the Americans with Disabilities Act of 1990 (ADA), a wide-ranging pro-active civil rights law to protect against discrimination across the country, while inevitably imperfect, sets a standard that has produced a society with guaranteed access in transportation, education, employment, access to public buildings including accommodation and health facilities, and telecommunications (Peacock, Iezzoni, Harkin 2015). In contrast, Canada has no comprehensive national policy to ensure accessibility across the country, but instead a patchwork of regulations and policies at various levels and jurisdictions.
Some Canadians argue that Canada has a different form of federation, and regulation needs to be more local, but the ODA (Ontario) has had limited impact, and other acts like the Charter require expensive litigation on the part of the person discriminated against. Once thriving disability organizations have been severely curtailed or compromised by recent government cutbacks, reflective of the general reduction in the social safety net across many conditions and populations. Some disability organizations are hesitant to spend their limited resources of time and money on legislation rather than more urgent advocacy issues. However, there is support inside the disability rights movement and with allies for a National Canadians with Disabilities Act, with teeth to enforce the principles of equality and inclusion, to ensure full participation in society by all people living with disabilities (Klein 1997a; Klein 1997b; Klein 2006; Picard 2015).
- Should there be enforceable Canadian and Provincial disabilities acts?
- Should society pay for the necessary accommodations and supports for people with disabilities to participate fully in society? For example, should people with disabilities be able to live in small-group configurations and have control of hiring and firing their necessary caregivers?
- Should family members be paid for caregiving?
- Bonnie was married to a physician. Who advocates for patients who cannot advocate for themselves?
Employment and Social Development Canada. 2012. “Canadians in Context- People with Disabilities.” http://well-being.esdc.gc.ca/misme-iowb/.3ndic.1t.4r@-eng.jsp?iid=40
Human Resources and Skills Development Canada. 2011. “Disability in Canada: A 2006 Profile.” http://www.esdc.gc.ca/eng/disability/arc/disability_2006.shtml
Klein, Bonnie S. 1997a. Slow Dance: A Story of Stroke, Love and Disability: Knopf Canada: available on Amazon.ca.
———. 2006. “Shameless: the Art of Disability” (film). 71 min, 30s. https://www.nfb.ca/film/shameless_the_art_of_disability
Klein, MC. 1997b. “Too Close for Comfort: A Family Physician Questions Whether Medical Professionals Should be Excluded from their Loved Ones’ Care.” Canadian Medical Association Journal 156 (1):53-5.
Ontario Human Rights Commission. 2011. Disability and human rights (brochure). Queen’s Printer for Ontario. http://www.ohrc.on.ca/en/disability-and-human-rights-brochure.
Peacock, G., Iezzoni, L., Harkin, T. 2015. Health Care for Americans with Disabilities-25 Years after the ADA. New Engl J Med. DOI: 10.1056/NEJMp1508854
Picard, A. 2015. “It’s well past time for a Canadians with Disabilities Act.” The Globe and Mail, August 11. http://www.theglobeandmail.com/globe-debate/its-well-past-time-for-a-canadians-with-disabilities-act/article25904732/
Rick Hansen Foundation. 2015. “Disability in Canada and around the world.” Accessed August 18. https://www.rickhansen.com/About-Us/About-the-Foundation/Disability-In-Canada-and-Around-the-World.
Statistics Canada. 2013. “Disability in Canada: Initial findings from the Canadian Survey on Disability.” http://www.statcan.gc.ca/pub/89-654-x/89-654-x2013002-eng.htm
United Nations. 2006. “Convention on the Rights of Persons with Disabilities.” http://www.un.org/disabilities/convention/conventionfull.shtml#top
World Health Organization. 2014. “Disability and Health: Fact Sheet N° 352.” http://www.who.int/mediacentre/factsheets/fs352/en/