By Derek Newman-Stille
The medical model of disability presents disabled bodies are things that are broken and in need of being fixed by a medical professional. Our bodies are presented within the medical model as incomplete and flawed and our knowledge and experience of our bodies is treated as irrelevant information. This poses a considerable issue with disabled access to medical practitioners. Many of us have disabilities that require constant contact with doctors. This puts us completely under the control of that doctor and subject to their assumptions about our bodies, which are largely shaped by the medical model.
Doctors regularly give up on disabled patients, especially when we have long term conditions that cannot be “fixed”, but are persistent. This happens so often that we have a term for it – “patient abandonment”. Patient abandonment generally refers to the process by which doctors terminate their work with a patient. However, it can also refer to denial of service.
Disabled people frequently face the threat of withdrawal of care if they are “non-compliant”, which is a lose definition applied to situations where we say “no. That is not in the best interests of my health”. Various patient rights organizations have expressed the need for firm policies around patient rights to access to care. The Patient Bill of Rights Ontario states:
“Every resident of Ontario has the following rights:
1. The right to receive all necessary health care services in a health care system that,
i. is accessible, universal, comprehensive and publicly administered and funded,
ii. offers freedom of choice,
iii. provides timely treatment,
iv. does not allow personal income to determine access to health care services, and
v. recognizes that every provider of health care services is a valued member of a multidisciplinary health care team.
2. The right to give or refuse consent to the provision of health care services.
3. The right to all information necessary to make fully informed health care choices, including information about who will provide particular services and about the qualifications of those providers.
4. The right to receive publicly funded health care of high quality in the home and in the community as well as in health care facilities.
5. The right to receive information, whether in a health care facility or in the community, about choices that promote good health and measures that prevent illness and accident.
6. The right to be dealt with by health care service providers,
i. with courtesy and respect,
ii. in a manner that recognizes individual dignity and privacy and promotes individual autonomy,
iii. in a manner that recognizes and responds to individual needs and preferences, including those based on ethnic, spiritual, linguistic, familial and cultural factors,
iv. without mental, physical, sexual or financial abuse.
7. The right to participate in any assessment of personal care requirements and in the development of plans for care.
8. The right to make complaints, raise concerns and recommend changes without fear of interference, coercion, discrimination or reprisal.
9. The right to be informed of,
i. the laws, rules and policies affecting providers of health care services, and
ii. the procedures for initiating complaints about providers of health care services.
10. The right to confidentiality of health care records in accordance with the law.” (https://www.ola.org/en/legislative-business/bills/parliament-38/session-1/bill-22)
And yet these rights are regularly violated by medical practitioners working with disabled people.
I want to give a personal auto-ethnographic example about my experiences with my own doctor. I was initially excited to work with this doctor because she does work around the LGBTQ2IA community. But during our first meeting, I mentioned that I am a disability advocate and was organizing a talk around health and LGBTQ2IA identities. She replied “No. You disabled advocates constantly demonize doctors. Why would I want to experience that”. I tried to explain that this was not the case, and that I was hoping to open an important dialogue around LGBTQ2IA and Disability. Following this, I was subject to hostility during each of my encounters. A lot of this hostility centred around the doctor telling me that my disability is either in my head or due to my diabetes. My disability is spinal, so I started bringing my MRIs with me to appointments to show them to the doctor each time.
However, I went in to the doctor’s office in early March of this year and met with one of the nurses on her team. I disclosed to the nurse that I had attempted suicide and wanted assistance changing my medications. The nurse noted her concerns when she saw cuts up and down my arms and sent a message to the doctor to say that my suicidality was a concern and that we should have a conversation about my medication. The doctor told her that the suicidality was likely due to my blood sugars (I am diabetic) and then said that she wouldn’t reassess my medications until I got a blood sugar test. I wear an implant to assess my blood sugar and check it multiple times per day. The nurse sent another message to the doctor informing her of this and she replied that there was nothing I could do without a blood sugar test and to just send me away with a blood sugar test form.
Blood sugar is not a primary factor in suicidal ideation and I am also on antidepressants and an anticonvulsant. These were not reassessed.
This occurred just before COVID-19 and when I tried to make another appointment to talk to my doctor about mental health resources and to ask about changing my medications, I was denied access. I was told at that time that I could not access my doctor because I didn’t have a completed blood sugar test. I informed the clinic that I am immunocompromised and did not feel safe going to the blood clinic (a space that is the size of an average livingroom and would not allow 2 meters of distancing). I raised this concern and was told “We can’t help you unless you get blood sugar tests” and told me that I should not worry about COVID. I reitterated that I am immunocompromised and mentioned that blood sugar and suicidality do not correlate and mentioned that my medication for depression, anxiety, and convulsions was probably a concern. I was repeatedly denied service, so I went directly to my pharmacist who was able to give me support and advice about my medication.
I decided that I wouldn’t be able to get any help from my doctor, who made it clear that she was not engaging with the seriousness of my disability and mental health issues.
I chalked this up to a poor attitude about mental health and kept telling myself “but she is one of the few doctors in town who really works with and supports LGBTQ2IA patients.
In early April, I began to have signs of a sinus infection. When I called the doctor, I was again told that I could not get access to the doctor without a completed blood sugar test at the blood clinic. I once again told the receptionist that I am immunocompromised and do not want to risk catching and spreading COVID-19. She told me that I was a “noncompliant patient” and that I could not get access to the doctor. I explained that a sinus infection in no way relates to blood sugar and was consistently getting worse. I was told “we are a team here and you have to follow the rules and be a team player and do what we tell you if you want to talk to your doctor.” I mentioned again that I test my blood sugar at home and had hourly data since January if that was needed. She said that she would contact the doctor.
A week and a half passed and I started calling again. Each time, I was told that I was noncompliant and that noncompliant people don’t get to see the doctor. (Note: I was asking for a virtual appointment because I am immunocompromised and wasn’t able to go into the office physically, but the office provides virtual appointments).
I am sharing my experiences here because I know that I am not alone in being denied care. This is a systemic issue and ties into ideas fo medical authority and medicalized power. Our medical system tells doctors that they are all knowing and that they have more knowledge of their patients’ bodies than we do. This feeling of expertise means that many doctors feel threatened when we say “no” and then use denial of medical service as a punishment.
Finally called with information on patient rights and informed them that what they were doing was a violation of my right of access to health care and also a violation of my right to say “no” to a procedure that could endanger my health (by exposing me to COVID-19). I explained that I would not contribute to the issues around COVID-19’s spread and that I also didn’t want to overload an already taxed medical system by taking time and care away from those that need it for urgent issues related to the virus. I was told that I was noncompliant and that they wouldn’t respond until I had a completed blood sugar test. I want to reiterate that a sinus infection and blood sugar are unrelated, so this demand was not being done for my health or safety.
We need access to better supports as disabled patients. We need to be able to have support to say “no” and to get access to medical practitioners when we need them.
It is time for us to have clear and reinforceable guidelines around access to care and to prevent situations of medicalized authority and the denial of patient care.
In my case, I was able to access a pharmacist who assisted me with changing my medication so that I didn’t continue suicidal attempts, but I am also in a privileged position of being confident to contact my pharmacist and find ways of working around the denial of care. Other suicidal people and people in mental health crisis may not have the same access and may not feel able to contact other medical practitioners after being denied care relating to their suicide attempts, so I worry about the results of denial of care for other people in my situation.