Why I love Stephen … #chronicillness #disabled #autoimmune

You know what I love most about Professor Stephen Hawking? Its the fact that he reminded the entire world that just because we may be #chronically ill, #disabled or have a debilitating #autoimmune disease, we are still very talented and intellectual people! Most people see someone sick and disabled and it conjures up some very preconceived and unfavorable notions. Their physical limitations become the main feature of who they are as people and how much they are valued in relationships. I cant tell you how many times my husband and I have been out together in the wheelchair and people will assume that I am also intellectually impaired. Some people even ask my husband questions without even making eye contact with me. It used to annoy me but now I just chuckle to myself,  but most of all it makes me write… and write… and write…

Even though my physical abilities have changed forever, ironically, some of the most profound thoughts and insights that I have made, I have made in the midst of some difficult and painful relapses. I would like the world to be aware and know that [we] may have lost a lot of physical abilities and predictability but we have gained a lot of wisdom from our experiences; and many of us have very well functioning minds and intellects. Professor Hawking epitomizes the idea of the separation of mind and body. He is a genius wrapped in a very ill body; but he still manages to share his incredible and amazing mind with the entire world! That is his legacy and that is also our inspiration.

The mind / body barrier is a difficult one and each of us have a very different experience with it. A lot of my friends and family have often told me that “[they] feel 18” even if their body is over 50. Many of those with chronic illness, disability and diseases have that same dichotomy on a much more severe scale. Most days I feel mentally in my prime while my body can be struggling to function at all.

Why does the world not recognize this? I think the answer has a multitude of factors that are quite complicated. Firstly, there are very few employees who pay us for our minds, unless we are at the genius level of Professor Hawking of course. Most employers want someone who will work long hours, doing physical work, and be relied upon to do that all day, every day, without fail. That is simply not achievable for the majority of people who suffer from many types of illnesses and diseases. Therefore to an employer that even gets a whiff that we might not be capable of meeting their physical needs they will not be at all interested in retaining our services or skills. A lot of people I know have tried to carve out alternative and flexible careers with various degrees of success and it really is dependent on where you find yourself on the ‘functional’ scale as to how much ‘business’ success you will achieve. This could be the focus of an entire topic alone but I wont delve too deeply here as it not the point of this particular blog. Many of us who have several diseases, extended periods of relapses and very uncooperative bodies struggle to make a career and ongoing profession a reality. Memory, speech, cognitive ability, reliability, all play very big factors here too. Pain has no concept of time and time makes no difference to pain. Something the Chronically ill know only too well.

But I still love learning when I can, and about ANYTHING I can. My mind, is still hungry and has even been expanded by the experiences that have happened to me. My world view has been forever changed and I think I have more to offer now (on my good days) then I ever did when I had a fit, slim, attractive, very busy, overly ambitions and over worked body. Its worth pointing out here that women suffer particularly in the loss physicality as for so long we have been judged, desired, marketed and our very survival and identities relied on how hard we could work, what good home makers and mothers we could be. What incomes we could achieve whilst still maintaining a pleasing figure and desirable curves has been added to the list of demands in the past fifty years as we have the burden of career, parenthood and home maker (ridiculously called “having it all” by a male dominate social policy). So, when those things are stripped away… there is no limit to how difficult the struggle can become for women; unless you build up your personal confidence and see yourself as more than mere nurtures/income providers/ home makers. I would argue that some of the most effective feminist advocates are women who live with disabilities and chronic illness and still have managed to find their true worth and voice! I like to think I am one of them.

I have long respected those people who have used their talents and their abilities, despite any challenges that have been placed in their path. In fact quite often our challenges and our difficulties make sharing our talents and abilities far more rewarding. What Professor Hawking has done for science and academia is nothing compared to the tremendous endorsement he has given to those with disability, diseases, and illness. Perhaps he would not have CHOSEN his own disability, if given the choice, but very few of us would either. The push to continue to learn, evolve, discover and share his intellect was more powerful than the urge to hide away and not share his talents. I personally believe despite any limitations, challenges or difficulties placed in our way, we still owe it to ourselves, our loved ones and humanity to use our skills, our talents and abilities to make sure that the world is enriched and enlightened by them. Any voice that is silenced is a loss to the collective wisdom of humanity.

Blind artists, Deaf singers, Disabled athletes, Crippled academics,  Arthritic mothers, Diabetic teachers, Bipolar Doctors everyone has a voice and a unique perspective that the rest of the world should, MUST, have access to or we will remain a stereotype. A static, stagnant caricature of humanity who’s identity is steeped in fame, wealth, greed, superficiality, misogyny and ignorance.

There is more to me than this mortal coil, and there is much more society can learn from each different experience and human condition. If we keep making our voices heard and refuse to be silenced the more we become part of the conversation.

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