Confronting Discrimination and Health Challenges Isn’t a Contest

Confronting Discrimination and Health Challenges Isn’t a Contest

I looked up the definition of “minority group” the other day, and it was defined as “a group that is different racially, politically, etc., from a larger group of which it is a part.

I was prompted to think about the term by a lot of discourse that has occurred lately on both my Instagram and Twitter feeds, funnily enough. Usually Instagram doesn’t have a whole heck of a lot of discourse. But recently, there’s been a lot of talk about disability. Unfortunately, I’m seeing comments like: “You’re not sick enough,” “I’m sicker than you,” or “I have more problems, so my life is worse.” 

It’s like an odd game in which the winner has the worst life, earning the privilege of bragging that they are sicker and therefore more deserving of empathy. 

I saw one post in which someone asked whether they were considered a minority because they have a disability, but perhaps not as bad as others. Someone told them they aren’t. 

What?

The term minority has many forms and encompasses many groups. 

Ethnic minorities can overlap with political minorities, which can overlap with disability minorities, and so on. Maybe you belong to just one minority group. Or maybe you belong to six or seven. But how does that morph into “my life is worse than yours because of this?”

If you belong to more than one minority group, you have more hurdles to clear. I understand that. I belong to one minority group, unless you consider women a minority, in which case I belong to two. According to this graph, the world’s percentage of women to men is slightly less than half.

We will go with one for now. 

Disability.

I’m white, straight, and Canadian. I include the geological factor because I understand that as a Canadian citizen, things are quite a bit easier, considering our healthcare system and general political outlook. 

So I understand that I already have privilege — meaning I don’t have to clear the same hurdles as those of other races or ethnicities.

However, disability does entail being a minority; therefore, I have the same hurdles as everyone who is disabled, if we were looking only at disability as the minority group. 

My hurdles include:

Healthcare. Even as a Canadian, the healthcare system is not always easy to deal with. This is particularly true for medical devices. Adaptive technology. Wheelchair funding. Expensive treatments. Only minimal funding is available for someone with a disability over age 18.

Doctors often advise that if you need something, it’s best to obtain it before age 18. This makes little sense given that many disabilities are progressive in nature, and we may not need something until many years down the line.

Even then, the medical company providing the funding may deem it unnecessary. Or doctors may have made a mistake in the paperwork. People can be denied for these things, and often the application won’t receive a second look.

Accessibility of most public and private areas. If you require accessibility adaptations in your home or in a home you wish to live in, you likely will have to pay for those yourself. Assistive programs do exist for this type of thing, but even these programs require you to jump through multiple hoops to be considered. It can take months, or even years, to receive an answer. And this is before you start construction.

Also, many public areas aren’t accessible, and while there are laws against this, what can we really do? Oftentimes, we simply walk away, ignore it, and move on.

Being seen as a viable human being. I deserve respect, basic human civility, and rights. Yet I often am not afforded these rights. 

I face additional hurdles, but I am approaching the word count limit for my column.

In any of these situations, including social situations, I must continuously fight for myself. I know my body best. I know my situation best. And I know my health needs best.

These are hard hurdles. But I am not the only one who faces them. Nor am I part of several minority groups, which entails additional obstacles.

So why must we argue about who has it worse? This isn’t a contest. It’s life. 

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

Kala Godin is a 22 year old woman. She lives in Alberta, Canada. She was diagnosed with SMA type 2 at 11 months old. She is a Columnist, Author, and Editor. In her weekly column titled, “The Mermaid Chronic(les)” she discusses her life with SMA. This covers a wide range of topics, from her daily life to the expectation of others. No matter the topic, she tries to keep things silly and sarcastic.
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Kala Godin is a 22 year old woman. She lives in Alberta, Canada. She was diagnosed with SMA type 2 at 11 months old. She is a Columnist, Author, and Editor. In her weekly column titled, “The Mermaid Chronic(les)” she discusses her life with SMA. This covers a wide range of topics, from her daily life to the expectation of others. No matter the topic, she tries to keep things silly and sarcastic.

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