With Sickle Cell, Do You Consider Yourself Disabled?
Posted Mar 10 2011 8:39pm
Written by SCSista on 10 March 2011
One of the most eloquent warriors I have ever met, Myiesha, asked this question on the SickleCell Sistahood page; and then wrote this thought-provoking piece that resonated with me so deeply that I had to share with all of you. The question was:
Disability takes on a different connotation for everyone. As a person with SCD do you identify as being disabled?
Think about it for a second. What is your perception of disability, and do you consider yourself disabled? Leave your answer in the comment box.
This goes for ALL WARRIORS, have you thought about how claiming you are disabled is perceived by society? As you know women of color are perceived in very different contexts that men of color, white women and white men. It shouldn’t be a surprise that our “positions” in life determine how we will be regarded – and are most definitely the case in the medical world.
For example has anyone ever experienced the change in tone, attitude and behavior some doctors and/or nurses take when she/he finds out that you are educated, not ignorant, and are articulate? I know I have run into this phenomena many many time. Once you open your mouth their whole perception of you which was formed by their specific position in life, is either reinforced or changed altogether. I cannot count how many times I became more of a credible candidate for a job once my resume and educational background was known and/or I was given the opportunity to SPEAK. Honestly its so bizarre to the point of being humorous. As a black woman or a woman of color, we all fall prey to the most prevalent stereotypes in this society. Just as we ALL fall prey to cultural and ethnic based stereotypes there are stereotypes formed based on disability and one’s capabilities as a result of a disability. So much so that disclosure of a disability can cause you a job you were a perfect match for. Too many time I have spoken with warrior sistas about my take on disease disclosure. Because the reality is that sometimes even when you don’t deem yourself disabled simple disclosure will mean others will label you regardless. Navigating the Americans with Disabilities Act becomes such a sticky situation because the employers have multiple ways they can get around this act. Hence there isn’t a right answer as to whether to disclose or not - not in my opinion. However I do believe that any employer that is willing to fire you or not consider you due to your illness isn’t a company you should want to work for - PERIOD!
For this reason and in an attempt to create a more easily feted, agreeable and applicable definition of SCD as it relates to disability for the Social Security Administration I have conversed with warriors whom adorn the label disabled and those who choose not to. Consequently I have found between those who don’t adorn that label is they choose not to for one or all of the following reasons.
1. The connection between mind, body, and spirit is a strong connection. Those warriors whom believe in mind over matter and practice holistic avenues of promoting and ensuring wellness tend to practice exercises that promote positive thinking versus negative thinking. Along the same grain claiming one’s body as disabled for some means relinquishing a certain power of control over that connection between mind and body. Viewing ones body as disabled for some is the first step towards ensuring physical disability, since what your mind believes will soon manifest physically. The power of positive thinking goes so far beyond believing you will be well, it flows into the realm of what you focus on and how you view yourself will aid in the creation of YOU. Being disabled presents a barrier to positive thinking, instead of creating a constant ebb and flow between positive thinking and positive manifestations of health and wellness. Instead of you are what you eat – you are what you think.
2. Secondly beyond the power of your thoughts and mind – once you adorn that label you allow others to see you in that light – thus handing over a certain amount of power to others and allowing them to determine your physical well being. Furthermore the idea of having a Disability in this western society isn’t a positive attribute at all. Those who are deemed federally disabled are thus limited in every way possible, physically, monetarily, sexually, plus are seen as less intelligent beings, far less physically, and sexually capable, unequal, and incompetent in so many other ways. For example: Those who file for Social Security Disability benefits are relegated to living a life which is pre-deteremined by federal guidelines that are preposterous and so very unreasonable. Essentially you are relegated to live a life of poverty should this disability be life long. As disabled individuals whom typically require more financial resources to be self sufficient and live a positive lifestyle we are given benefits which barely cover housing, food and other necessities. How backwards is that?
Furthermore as a disabled individual you are seen as second class citizens and if you are a person of color, plus female you are disadvantaged times three. There isn’t a sense of equality for persons who claim disability, not from a personhood perspective, a monetary, or a civil rights perspective. We live in 2011 and some schools STILL don’t consider their disabled students when developing services – but they will still take your money for tuition. Thus being labeled as disabled is akin to being marked with a scarlet letter, you CAN be instantly denigrated in ways you may never specifically know, but yet will feel and manifest as stressors, cause us to burnout in our personal and professional lives faster than our healthy counterparts, and be at risk for other health risks in addition to dealing with SCD.
3. Another common factor I have found is that although SCD can be disabling it isn’t for everyone, and can be disabling for periods of crises yet will resolve after the brunt of the pain goes away. Since SCD hasn’t been medically deemed as a disability its truly a person’s secondary conditions that will funnel warriors into that disabled category, or not. Personally for me I claimed the label several month after I was diagnosed with AVN – Avascualar Necrosis. The diagnosis itself didn’t cause me to automatically adorn the label. Instead it was when my right femur head showed evidence of collapse, and the limp I’d developed over the course of 3-6 months became permanent, that I began to wrap my head around the idea my condition was permanent. In all honesty I FOUGHT that label, I fought being deemed as disabled because I recognized from the beginning how my position would change, how my treatment would change, and how my experiences would be seasoned plus effected by this one little word albeit a courageous admission. I don’t look for hardship, but I do look forward each day to being the realest Myiesha I can be. For 16 years I never claimed my SCD was a disability because it was important to me to be treated as everyone else – typical teenager behavior. In my eyes being disabled would immediately classify and separate me, and that wasn’t an option in high school and as a popular teen. As a teenager especially – we refute and fight being DIFFERENT to the tee! However as the AVN became more of a reality I realized that I needed to represent myself in the fullest and realest way possible. To me ignoring something so obvious was an act of neglect instead of an act of acceptance. It definitely didn’t feel like I was being very positive, or emitting positive thinking. Instead I found I could remain positive and evoke the true Myiesha as she came into her own. And a big part of that was my transition from having a chronic illness to having a chronic illness with a disabling secondary complication. In that truth, in that reality I felt I could be my very best, and be the most positive thinker ever. Otherwise I felt like a fraud and as if I were simply ignoring and not sharing whole the real ME was/is. This isn’t everyone’s reality! I respect each persons RIGHT to come into their own reality, in the way that best suits them.
Because my courageous admission did come at a cost – I lost my two best friends who couldn’t, for whatever reasons, deal with my “leaning on them”. During the most trying time of my teenage years I had to face the bulk of it on my own because my best friends in their youth didn’t know how to deal with the backlash of having a friend who was on crutches for 3 years, was looked at as an invalid, drove the boys away out of ignorance, and quite simply just didn’t understand what I was going through. In my adulthood I recognized how they must have dealt with the sudden transition of having a gorgeous friend with a hidden illness, come to school the next day with a visible disability and required their utmost undying attention and dedication. I must admit that must’ve been quite an ordeal to process. I doubt I would’ve handled it that way – but who knows.
I say all of this to try and inspire a continuous conversation about how we perceive ourselves vs the way we are perceived by society. We have talked about the impact of our medical care and medical professionals on our lives, yet we have yet to dive into how we are impacted by societal perceptions and concerns. I feel we’d gain a greater understanding of how to address the fact that we live with a disease that is largely obscure in our medical and ethnic and culturally based communities, and in larger society both nationally and globally; and furthermore how to bring the discourse surrounding SCD out of obscurity and not only to address a cure but to also address quality of care and other psychosocial impacts on SCD. We’ve scratched the surface and really need to delve deeper from many aspects…