Don’t do it. Don’t do it. My mind recalls a reel on Instagram, “Girl, don’t do it!” You don’t share your thoughts on these things. It is better to let it go. If I don’t say something about this, who will? What are you afraid of? Being controversial? Making someone upset? Remember that thing we heard: “If you’re not pissing someone off, you aren’t creating change.” I may have screwed that up, but doesn’t that make it MY quote now? You have the authority to speak on this. As the mom and primary caregiver of a disabled person, you have credibility. Advocating for people with disabilities is something you believe in. You do not need validation or permission. If you make someone mad, that is not your problem. You are only stating your opinion. Everyone has opinions and we don’t always agree. Isn’t that part of what makes the world awesome? Diversity in our thoughts is amazing. Okay, let’s do it.
Isn’t the crazy inside my head awesome? I wasn’t planning to write about this topic today (or ever). I was reading an article about diversity for a post (now next week’s post) when I saw a headline that captured my attention. I immediately clicked on the link and began to read. The further I got, the angrier I became. I wanted to respond to the article and add my two cents. As I finished the article, I received a text from a friend sharing a link to a YouTube video, So, you want to be a writer? It was written by Charles Bukowski. It was exactly what I needed to hear. In it, he says, “unless it comes out of your soul like a rocket, don’t do it.” Well, thank you Charles Bukowski for the push. My thoughts began to emerge. They were coming out faster than I could get them onto paper. Words shooting out of me like a rocket!
The title of the article in Forbes Magazine: Ricky Gervais’ Dismissive Alopecia Remarks Sparks Debate on Disability Definition by Gus Alexiou stirred up strong emotions. As I read this article, I began to fume inside. I rarely get angered by anything outside my control. Maybe it was the topic of disability. Possibly it struck me because of the fierce love and protectiveness I hold for my disabled daughter. I invite you to read the article for yourself and form your own opinions. The article discussed comments Ricky Gervais made about the Will Smith and Chris Rock incident at the Oscars. (I would have never known the Oscars had happened without all the drama that followed.) Ricky Gervais called out people that said Chris Rock was making fun of Jaden Smith’s disability. WHAT!?! Disability? What disability? Oh, alopecia? Oh, sorry Ms. Smith and those toting that thought, that is a hard NO. Alopecia is a terrible condition. I have empathy for her and others that suffer from it, but to call it a disability is a joke. On that, and maybe only that, Ricky Gervais and I agree. It does not meet the legal definition of a disability and it does not meet my personal definition of a disability. It is a figurative slap in the face to millions of Americans that live with chronic illness, rare disorders, and physical and cognitive issues that significantly impact their lives daily.
This is how the ADA website defines disability: An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.
Apparently, there are people out there that perceive alopecia as an impairment and I take issue with that. Alopecia does not substantially limit Jaden Smith’s life. She can go to work every day. She is capable of buying, preparing, and consuming her meals without help. She doesn’t require the assistance of other people to perform daily tasks for her. She has the cognitive ability to make choices and decisions. Ms. Smith can live her life without outside assistance or help. It may impact her self-esteem, but newsflash, we all suffer from things that may dent or bruise our self-esteem. Alopecia is a condition and not a disability.
Can you tell I am riled up? I do not like labels. I was angered when my son was experiencing some anxiety and depression in his teen years and doctors were quick to slap a label on him. Recently I have experienced health issues and I refuse to accept the label they want to stick on me. Labels have repercussions. Generally, labels do not help us. Except, when they do. Emily has a disability that significantly impacts her ability to care for herself. She cannot hold a job or communicate her needs. She is unable to prepare her own food or manage her hygiene. She cannot live independently. She is dependent on others to support her physically and financially. Being labeled as disabled allows her access to services and programs to assist her financially and assist in her care. If we broaden the definition of disability to a point where anyone and everyone can find something to call a disability, it diminishes the term. It marginalizes Emily and could impact her ability to access services that are vital to Emily’s care.
Gus Alexiou stated is perfectly in his article, “An additional inherent danger in having too broad a definition of disability is that the term may end up becoming trivialized by incorporating medical conditions that are usually viewed as more minor, or primarily cosmetic in nature, with less pronounced functional deficits. This could lead to a more complacent attitude across wider society towards those with more serious illnesses and impairments who are in genuine need of special consideration and tailored assistance.”
I don’t want the term disability to be watered down. I do not want my daughter’s significant mental and physical delays to be trivialized. I am not cold-hearted or callous to those that suffer from alopecia and any other condition. I sometimes get breakouts of eczema. While these breakouts can be uncomfortable and evoke insecurity in me, I am not disabled. I have a condition. A condition by itself is not a disability. I want the net of disability to be wide enough to allow those that need supportive services to get them, but not so wide that there are not enough resources to provide to those that are vulnerable and dependent on them. Calling alopecia, eczema, and other conditions a disability can create a slippery slope.
Conversation for Change 