Grabbing the Bull by the Horns: Why Human Rights Matter for Sickle Cell Disease
Sickle cell disease (SCD) is famously understood as the world’s first “molecular disease.” However, this medical model ignores the social aspects of SCD, including disability, race, and gender. Human rights protections may be underused for people with SCD when we consider everyday problems related to housing, school, and employment. This article explores human rights in Ontario and why they matter for SCD.
Terry’s Story
Although not representative of any single person, Terry’s Story is based on the everyday experiences of people with SCD.
Ever since I came to Toronto, I experienced discrimination in many areas of my life, including housing, employment, and healthcare. I always seemed to have trouble finding housing as well as work. I often wondered: Are they treating me differently because of my race?
Discrimination in housing is the most challenging. One wintery month, my landlord informed me that my annual rental lease was expiring and I had to move out. Although I later learned that I did not legally have to move out, I nonetheless began my search for housing. I knew this was going to be difficult because rent is very high in Toronto – the city where all my sickle cell care is located.
On Kijiji and Craiglist, the few affordable postings said: “Asians Only”, “Indians Only”, “No Cooking!”, or “Vegans only.” I knew that these landlords would not want me as a Black person who enjoys cooking cultural foods and needs to eat a healthy and wholesome diet to prevent crises.
I asked for help from a housing worker, who eventually connected me to a transitional housing unit with affordable rent. I was so happy and relieved to find a place! My hopes were soon dashed when I learned that the housing provider did not accept residents who use hydromorphone (opioid) – a prescription medication I require to treat SCD pain.
With the help of my care providers, I was somehow accepted into the housing program. However, this acceptance came at a cost: I was not allowed to take my medications and had to do random urine testing. Without my medications, I had many sleepless nights of pain. I was worried that if I took my medications, I would be evicted and become homeless. I was also concerned that, without my medications, I would have a pain crisis and become hospitalized. To prevent hospitalization, I started to take Tylenol to manage my pain – however, this triggered anxieties about my liver. Overall, I was frustrated, anxious, and scared for my life. I felt like a criminal in my own home!
What is Discrimination?
Discrimination is being treated unfairly due to specific personal characteristics. Such characteristics, which are protected under various human rights laws, include those that relate to disability, race, ancestry, place of origin, ethnic origin, colour, citizenship, religion, creed, sex, sexual orientation, age, marital status, and family status.
Discrimination can happen explicitly – for example, an employer refusing to hire a woman because she ‘might get pregnant and take time off.’ Discrimination can also happen through an action, rule, or requirement that disproportionately affects members of a certain group – for example, requiring police officers to be more than six feet tall may disproportionately exclude women.
What are Human Rights Laws and how can they help?
Human Rights Laws protect people against discrimination. In Ontario, the Human Rights Code covers provincially regulated areas, including housing, school, employment, and goods and services.
The Human Rights Code requires employers and service providers to adjust rules, policies, and practices to accommodate needs arising from protected grounds as part of their duty to accommodate.
What is Intersectionality? Why is it important?
Intersectionality is a framework that considers that people have multiple identities. People experience oppression and privilege along race, gender, class, sexuality, disability, and other social markers.
Everyone has unique experiences. For example, a Black immigrant mother with SCD who is also a caregiver for her elderly parents may experience unique forms of discrimination due to her race, place of origin, gender, disability, and family status. Intersectionality helps us see people’s diverse identities and experiences, which helps provide meaningful supports and resources.
What can discrimination look like for people with SCD in Ontario?
UnderOntario’s Human Rights Code, medical conditions, like SCD and other red blood cell disorders, are disabilities. For people with SCD, discrimination can look like:
An employer refusing to hire a person due to their illness
An employer refusing to provide a worker time off to attend medical appointments
An employer firing a worker for being sick
A school refusing to reschedule an exam when a student is hospitalized
A social service organization banning prescription medications, including opioids
An Intersectional lens helps us better understand discrimination. Although SCD can affect anyone, in Ontario, the illness disproportionately impacts people who identify as African, Caribbean, or Black. Racism often shapes disability-related discrimination for people with SCD in Ontario.
As an example, Black people with SCD frequently deal with the stereotype that they are drug seekers. Such emotionally-painful experiences are based on the intersections of disability-related discrimination with unfounded and racist stereotypes of Black people as drug users.
Terry’s Story Continued
Ultimately, I sought help. I kept notes of my experiences and I connected with a free lawyer at a local community legal clinic. I told the lawyer my story and he listened to me. He had an open heart and understood my situation as well as my medical condition. The lawyer told me I was experiencing discrimination based on disability. I felt reassured that help was available to me.
The lawyer asked for my consent to communicate with my healthcare team to confirm my treatment. The lawyer then grabbed the bull by the horns and advocated on my behalf to live in the home and take my medications in peace. He put protections in place to prevent the housing provider from evicting me for trying to enforce my rights. Ultimately, the housing provider agreed that I would be able to take my prescriptions and that I would not be subject to urine tests. This gave me breathing space as well as an opportunity to focus on my career goals.
What is some advice for people who are facing discrimination?
Seek Emotional Support: Discrimination can be an isolating and intimidating experience. It can cause a lot of anxiety and worry, which can trigger pain crises for people with SCD. Speak with supportive family, friends, social workers, and counsellors to cope. Maintain hope and hold onto your beliefs.
Access Resources: Seek out information from credible resources, including lawyers from community legal clinics or the Human Rights Legal Support Centre.
Keep Documentation and Put Things in Writing: Keep all relevant documents to your experiences of discrimination. Put your concerns about discrimination into writing. Write it out!
Helpful Resources
Community Legal Clinics: Use this database to find a nearby community legal clinic for free legal services for those who are eligible.
Human Rights Legal Support Centre: Provides human rights legal services to people in Ontario who have experienced discrimination.
ARCH Disability Law: A community legal clinic that practices disability rights law.
Health Justice Program: Legal information and services to St. Michael’s Academic Family Health Team’s patients who are low-income and have legal issues affecting their well-being
About the Authors
Oluwayemisi Abatan is a trained nurse in Nigeria who has suffered and survived devastating consequences of sickle cell disease. Her goal is to become licenced to practice as a nurse in Canada and help other sickle cell anemia patients to accomplish their goals and desires in life.
Sinthu Srikanthan is a passionate social worker in the Red Blood Cell Disorders clinic at the University Health Network. Her goal is to support people with Sickle Cell Disease, Thalassemia, and other Red Blood Cell Disorders using Anti-Racist and Social Justice frameworks.
Brendan Jowett is a Staff Lawyer at Neighbourhood Legal Services and the Health Justice Program.
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