Research Study: Survey and Interview on Disability and Reproductive Health during COVID-19 in Canada
Who is eligible?
You may be eligible if you:
- Identify or may be identified as having a disability
- Identify as a woman, trans, or non-binary person
- Are 18 years or older
- Live and receive health care in Canada
What will you be doing?
- You have the option of completing a 20-minute survey and/or a 1-hour interview about your reproductive health and the health care services you received since the beginning of the COVID-19 pandemic.
- You can do the study, or not do the study. The choice you make will not impact the services you use now or later.
How will it work?
- The survey can be done by you online, by telephone or Zoom with a researcher at a time that works for you.
- The interview can also be done by telephone or Zoom.
- You are welcome to do both the survey and the interview.
- If you need any supports or accommodations to participate, please let us know.
What are the benefits of participating?
What you share about your reproductive health experiences during COVID-19 will help make services better for other people during and beyond the pandemic. You will receive a $15 gift card for the survey and a $40 gift card for the interview, to thank you.
Contact us Email wiresearch.utsc@utoronto.ca or call 647-601-4519. Visit our website for more information: www.utsc.utoronto.ca/projects/disabilitySRH
Notes
“Reproductive health” includes experiences related to contraception, abortion, sexually transmitted infections, cervical cancer screening, violence, pregnancy, postpartum health, and the health of your children.
“Disability” comprises a range of disabilities, including those who self-identify as disabled and/or d/Deaf. This definition is inclusive of those who have yet to receive an official diagnosis. We have chosen to be as inclusive as possible, consistent with our commitment to include those with disabilities who remain invisible and uncounted.
This study has been reviewed and approved by the University of Toronto Research Ethics Board #42194.
Researchers at the University of Toronto Scarborough have partnered with the Disabled Women’s Network (DAWN) Canada to design and run this study. This study is funded by Canadian Institutes of Health Research.
DABC Statement on Medical Assistance in Dying (MAiD) and Bill C-7
June 24, 2022
Disability Alliance BC (DABC) exists to support people with disabilities to live with dignity, independence, and as equal and full participants in community. We believe in, and champion, the autonomy of people with disabilities and the lives they lead. DABC recognizes that for some, Medical Assistance in Dying (MAiD) is an option they may choose, and for others, it is not a path they would choose. We support them both.
In 2015, assisted dying was decriminalized by the Supreme Court of Canada. Subsequently, with the passing of Bill C-14 in 2016, MAiD became law. Under Bill C-14, one major requirement was that the patient’s death had to be reasonably foreseeable to receive access. This restriction led to court challenges arguing that the “reasonably foreseeable” requirement violated the Canadian Charter of Rights and Freedoms. In 2019, a Quebec Superior Court judge ruled it was unconstitutional to restrict access in this way.[1] The government then produced Bill C-7 which split MAiD into two tracks. One track for patients whose death is reasonably foreseeable, and the other for those of whom it is not.
DABC cannot support Bill C-7 and any further expansion of MAiD.
Bill C-7 allows people with disabilities to be eligible for MAiD if they are enduring physical or psychological suffering “that is intolerable to them and that cannot be relieved under conditions that they consider acceptable” (Criminal Code s241.2(2)(c)). This eligibility has been misused to include situations where the intolerable suffering is caused by societal conditions, not medical conditions. These societal conditions include but are not limited to: the inability to afford treatments, the inability to access sufficient care, and the inability to access safe and affordable housing. In such cases, poverty is the true condition leading to intolerable suffering, not the disability itself.
Allowing access to MAiD for those who do not meet the reasonably foreseeable natural death (RFND) requirement, while simultaneously failing to implement adequate safeguards, has inevitably led to people accessing MAiD because of unmet societal needs or due to ableism within the medical profession itself, and not due to the effects of medical condition(s) on the people who have them. DABC has heard directly from clients who have experienced their doctors suggesting the possibility of accessing MAiD even though they never asked for this. Clients have expressed feelings of worthlessness and not feeling safe with their doctor.
Until people with disabilities are provided with social support and services that allow them to live a life where their societal needs are met, DABC cannot support Bill C-7, and calls for it to be repealed.
The current state of MAiD in Canada relies heavily on safeguards to strike a balance between respecting the “autonomy of individuals to choose MAiD as a means for relieving intolerable suffering” and “protecting vulnerable persons.”[2] However, certain safeguards have proven grossly insufficient in their intent of protecting life. Safeguards can fail to resolve underlying issues, be unavailable due to cost, distance, or wait times, or even go un-offered in the first place. When a person considers accessing MAiD, their path to a decision is “determined by the civil, social, economic and political context in which they live.”[3] Lack of access to basic needs like housing, medication, care, transportation, and financial stability intensifies suffering and may push some to categorize their level of suffering as intolerable. DABC raises serious concern over the impact of MAiD in its current form. Furthermore, the impending expansion to include mental illness and mature minors will compound its damage.
People with disabilities are being forced to choose death in the face of an ableist system that is perpetually refusing to provide the support they need to live. They deserve a real choice.
Sincerely,
The Board of Directors and Staff at Disability Alliance BC
[1] https://www.justice.gc.ca/eng/csj-sjc/pl/ad-am/c7/p1.html
[2] https://spcommreports.ohchr.org/TMResultsBase/DownLoadFile?gId=36253
[3] Human Rights Violations in Canada due to Medical Assistance in Dying Legislation, 2022
Download a PDF of the statement here:
https://disabilityalliancebc.org/wp-content/uploads/2022/06/DABC-Statement-on-MAiD-and-Bill-C-7.pdf .
Article: Looking "Too Good" To Have a Disability
This article was written by Michael Todaro, and originally appeared in DABC’s Transition magazine on Disability Justice (Spring 2022). Read the issue here.
In the year that I was applying for my Persons with Disabilities (PWD) designation, I have to admit I did a lot of soul-searching.
I knew I wouldn’t be taken seriously. Apparently, I looked great, as people never stopped telling me.
”You don’t know how good you have it,” said one friend, and others told me it was “all in my head.”
The reality was I was lethargic, could barely walk or talk most days and, as a rule, I didn’t sleep. My pain levels were unbelievably high day and night. I was 20 pounds underweight, anxious, depressed and suffering from post-traumatic stress. The circles under my eyes were permanent and made me look like an unimpressed raccoon. I was dizzy all day long.
On the day of my appointment with the doctor who would evaluate me for PWD, I got dressed and tried to look my best. I had been taught that if you wanted to be taken seriously, you have to dress well, so I was determined to make the best impression I could.
Are you laughing yet?
Because my pain levels were so high that day, it took me three hours to get ready. The morning routine for a person living with chronic health issues can be debilitating. Taking a shower, washing hair, getting dressed— all of these things take time and energy and, when you have neither and are in chronic pain, it makes for a rough day.
On this day, I was proud of myself because, despite wave after wave of pain, I was able to get it together and even looked pretty good to boot! In retrospect, I guess I looked too good. “Dressing for success” clearly doesn’t work if, as a result, the doctor thinks you are faking your disability.
When I arrived at the doctor’s office, instead of his usual friendly self, he scowled at me from behind his desk. I waited, watching this change in his demeanour.
After staring at me a few minutes, he said in a rage, “How dare you come into my office looking that good and expect me to help you with your disability application!”
In spite of being a well-educated doctor who had treated me for 14 months, he thought I looked too good to have a disability. To be honest, I had not been interested before in displaying my disability. I had kept it hidden. So he was surprised when I stopped hiding it.
His behaviour was pretty shocking. But it’s something that people with less visible disabilities face every day.
It’s true that people can sometimes be cruel, but, if we are kept ignorant and unaware of the needs and experiences of others, how can we be expected to know what to do? As a group, people with disabilities will remain vulnerable where this kind of ignorance prevails.
I don’t believe the onus of responsibility for creating space for all people with disabilities lies with the uninformed public. It lies with the governing bodies and services we use. These are the organizations which have yet to champion legislation that supports and protects people with various types of disabilities.
Our signage on BC buses, for example, often reads like a suggestion: “Please remember who these seats are for.” I think this is misguided and, in my experience, not that effective because not every person or culture views disability with compassion. By comparison, a sign in the US reads, “Disabled use only, $300 fine.” A clear message with a clear consequence.
It is time for all of us to do better for people living with invisible disabilities. London, England has found one way to do it. If you need to sit down on public transit, you can order a button that identifies you as someone who needs a seat.
People are not asked to justify their disability to receive a button. An education campaign told the public they were expected to offer a seat to someone who wore the button. TransLink could easily spearhead a similar program here in BC.
This takes the burden off the person with a disability to explain, each time, why they need a seat! Not everyone is always up for or well enough to fight that tiring battle.
I think this is an excellent approach to dealing with invisible disabilities while traveling because it legitimizes a person’s needs in the minds of those who might find fault with them. This also helps to remove anger from the equation, and focuses on a sustainable solution for people who do not look like they have a disability.
For passengers with a disability who are often not believed or taken seriously, a small change in the way we do things in BC could ensure the safety of people with visible and invisible disabilities.
References
CDC: Lupus Symptoms https://www.cdc.gov/lupus/basics/symptoms.htm
Please Offer Me a Seat at the Transport for London government website: https://tfl.gov.uk/transport-accessibility/please-offer-me-a-seat
Michael Todaro is an editor, writer and instructor living in the Vancouver area.
