Sarbjot Kaur: Disabilities in Focus - Stigma in South Asian Communities
Acceptance doesn’t mean mere sympathy一 it means support, equality, empathy, and empowerment
This is the fifth installment of a five-part series centering the knowledge and insights of people living with disabilities within the context of Punjabi and Sikh communities. You can read part one, Introducing Disabilities in Focus: Punjabi and Sikh Communities, by Shuranjeet Singh here, part two, Disabilities in Focus: Accessibility in Sikh Spaces, by Sukhjeen Kaur here, part three, Disabilities in Focus: Chronic Illness Through The Lens Of ਗੁਰਬਾਨੀ/Gurbaanee, by Jasmeet Kaur here, and part four, Lived Experience: Disabilities in Focus - ‘Half-Done’, here.
October 29, 2021 | 5 min. read | Disabilities in Focus Part 5
What do we South Asians do when we hear about someone’s disability or ailment? We immediately start pitying the person and judging their past, present, and future. We fear that if we talk about it, we will get it too. From an early age, we are taught not to talk about various physical and mental ailments – there is a social stigma and discrimination associated. We are made to think that individuals with disabilities are not capable of living successful and fulfilling lives. We come from a society where an individual’s physical appearance is given higher significance than their morals, ethics, intellect, and personality.
My four-year-old son was diagnosed with Spinal Muscular Atrophy (SMA) type III, a rare neuromuscular genetic disease that causes muscles to weaken. The diagnosis changed our lives in so many ways that we had never envisioned. We experienced a range of emotions, surprises, hope and enervation一it was like being on a boat ride that’s never going to stop sailing. After the diagnosis, I was motivated to share our journey in hopes of creating awareness and advocacy, and supporting parents in a similar situation. There is no cure for SMA and currently there are only two treatments approved by Health Canada.
There is a lack of equality when it comes to accessibility of SMA treatments in Canada. Each province in Canada has set its own drug eligibility criteria based on type and age resulting in inaccessibility for some SMA patients. Patients who are qualified for the treatment must go through a yearly assessment of physical abilities to qualify for funding of the treatment. It’s hard enough to get an SMA diagnosis or live with one, but it’s even worse knowing that treatment options are out there, but you can’t access them.
COVID-19 has put a lot of extra pressure on our health care system and economy and I do worry about the implications of this pandemic on future healthcare budgets and spending. Will there be cuts to future spending on research? What if funding is stopped for key drugs such as Spinraza due to the price tag? The most important question that comes to my mind is: why are drugs that are lifesaving and substantially improve quality of life so expensive? Isn’t access to these drugs a basic human right?
We need to understand that not all forms of disabilities are physically visible and fit in the traditional bucket, they are just the tip of the iceberg. There are invisible disabilities too, including mental health issues such as depression and anxiety, and learning issues are some examples of invisible disabilities. We need to understand that human bodies are complex and no one can be blamed for themselves or people around them living with a chronic ailment.
Our society has come a long way in openly talking about racism, gender equality, and various other political issues, but a lot of work still needs to be done in creating awareness about chronic conditions and advocating for accessibility. Even today there is a dark cloud in our culture that seems to have stuck with us. When we interact with people with disabilities, we fall victim to certain myths that are born out of our lack of knowledge. We need to come out of our comfort zone and advocate for our kids or loved ones, and share their journey, to raise awareness and break barriers. Advocacy and awareness lead to research for new treatments and therapies, and, most importantly, equity.
What can you do to help patients and caregivers who are dealing with any kind of physical or mental ailment? The answer is simple: accept the children, adults, and caregivers dealing with chronic conditions. Acceptance doesn’t mean mere sympathy一 it means support, equality, empathy, and empowerment. I want people to understand that it’s okay if individuals decide/need to use an assistive aid or do daily tasks like walking or sitting a bit differently than others. We must also remember that staring and pitiful looks rather than a simple acknowledgment through a smile or ‘Hi’” doesn’t help.
There shouldn’t be any stigma associated with any form of disability – also acceptance starts from home. It’s not easy for any parent to get a debilitating health diagnosis about their child but there are a few things that we as parents can do to help cope with the diagnosis.
First and foremost, we must gain an understanding of the diagnosis by seeking information from medical professionals and the resources available, such as social workers or service navigators, unapologetically. Remember: this is your child and the diagnosis has a profound effect on their life and yours. Therefore, it is important that you learn as much as you can about the diagnosis and resources available without feeling intimidated. It’s okay for parents to feel a range of emotions and acknowledging those emotions is equally important一they are not a sign of weakness, but of humanity. However, in acknowledging your emotions, try not to fall into the trap of self-pity as it can hinder the process of self-acceptance for you or your child when coming to terms with a diagnosis and has a negative effect on the mental well-being of you and your child.
Parents can be the strongest advocates for our children. Maybe due to the disability, the child’s development differs from that of other children, but this does not make him or her less valuable, less human, or less important. We need to understand that individuals with chronic ailments are equally capable of achieving their full potential if there is equity created through inclusion, awareness, and advocacy.
Following this series we are hoping to continue and build the conversation. If you are interested in getting involved with disability advocacy within Punjabi, Sikh and South Asian communities please complete this form and we will be in contact with further opportunities to get involved, meet new people and build our skills.
Sarbjot Kaur (she/her) is an audit and risk management professional based in Canada. She’s a mom advocating and raising awareness around disability to break the stigma associated with it after her son was diagnosed with Spinal Muscular Atrophy type III. You can contact her via her Instagram @araremoon.
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