Since it’s the third day of SMA Awareness Month I wanted to talk a little about cure mentality. Cure mentality is the mindset that there is something wrong with someone with a specific disability, so the only course of action is to cure them. The big problem with cure mentality is that it provides a sense that there is something missing or wrong with the person, so they need to be fixed. This is a big issue with disability, in general. People in the disability community have fought very hard to try and change the societal idea that we are broken or not whole.
This was a big problem for many of the adults who turned against the Jerry Lewis telethon. I, myself, am a former MDA poster child/goodwill ambassador, who became disillusioned with the organization in adulthood. In 1990, Jerry Lewis wrote a piece in Parade magazine, discussing how those of us with neuromuscular diseases were not whole people. We were half-persons “imprisoned in the steel confinement of our wheelchairs”. If you’ve read my other blog posts, you already know that, for me, I am not imprisoned in my wheelchair. It actually gave me a huge sense of independence. The Jerry Lewis telethon had that cure mentality.
We (all of us who were supposedly “Jerry’s kids) all grew up just waiting to be cured, and that is problematic….but I didn’t write this post so I could rant about Jerry Lewis or MDA. I wrote this post because cure mentality is actually harmful to people with disabilities, and I want you to understand why.
I would like to first say that wanting to regain function isn’t necessarily about curing someone. Many of us with disabilities would love to regain strength, would love to have less illness and hospitalization, and would like to have more independence, if possible. This is what I call treatment mentality. I guarantee if there was a treatment that reduced the symptoms associated with SMA, all of us with SMA, would be on board. But…treatment doesn’t imply we are less than. Treatment mentality implies you can regain functionality to make your life easier, to have less/no pain, nausea, or other harmful chronic symptoms of impairment. It doesn’t necessarily mean we’re broken. We just want to make our lives simpler and replace some of the accommodations we’ve made with our own functionality.
Second, I want to state that this supposed cure those with neuromuscular disabilities are all supposed to be seeking is not going to be of help to people who have long been living with SMA. Our bodies have endured the brunt of living with SMA. Our spines are crooked. Our limbs have contractures. We cannot fix these things. They are as they are, and no cure will reverse that. Hearing we need to be fixed, because we’re broken though, gives society the idea we’re not as capable, not as independent, or not as worthy as our able-bodied counterparts. That simply is not true. With the right accommodations, we can be just as capable as anyone else. This is the real travesty of cure mentality.
When you as a nondisabled person say you’re fighting to cure all disabled people, you’re actually building up the idea within kids with SMA that there is something wrong with them. This can affect their mental health, their self image, their self worth, and their self-esteem. Instead of focusing solely on what SMA takes away from them, we should be focusing on access and accommodation, and access means having access to treatment if wanted and needed. What can these children do on their own? What can they do with the right assistive technology? What can they do with other forms of assistance? What can they do in a world that is removed of barriers that get in their way? What can they do when they have less pain, and access to communication?
Instead of focusing solely on finding a cure, we need to be focusing on treatment options that increase independence and heath. We need to be focusing on making the world a more accessible place, so access barriers don’t exist. We need to be focused on individual strengths in all people with disabilities, not just those with SMA. We need to be providing these individuals with opportunities so they can obtain and achieve independence if and where possible.
Don’t say you want to cure me….help me to become a better more independent person who has access to all of the things I need. That truly is the only “cure” I am seeking!