I Am Proud of the Disability I Once Feared
I feared becoming disabled more than I feared multiple sclerosis.
At the time of my diagnosis, I was moving about well enough. My mobility changed as my disease progressed. My severe foot drop, unsteady gait, and change in speech were impossible to ignore.
My prejudice toward the disabled was hard to ignore. I was embarrassed by my disability. I marginalized myself and my needs. I later learned this was a form of internalized ableism. I familiarized myself with the meaning to better understand that which I feared. I faced head-on that which I feared most: being disabled.
I soon realized that much of my internalized ableism was rooted in childhood and resulted from systemic ableism.
According to writer Jahleel Wasser, “Systemic ableism is a system of institutions, policies, and societal values that disadvantage people based on societal values of intelligence, physical ability, and mental abilities. Systemic ableism consists of numerous barriers such as attitudinal, communication, physical, policy, programmatic, criminal justice, social/environmental, and transportation.”
Hindsight has offered perspective on the limited purview I had. While not malicious, this has inspired awareness.
Raised in an affluent enclave in Marin County, California, I wanted for nothing. I participated in a myriad of sports and activities and excelled at sailing and skiing. As an active child, I was not around others with disabilities. I noticed two or three individuals in wheelchairs in a specialized classroom. But this was only during school, and our classrooms were different. Outside of class, I rarely saw or interacted with anyone disabled.
I can see how this contributed to my seeing those with disabilities as different. And while some outward aspects differ, as people, we are all the same. As children, different is castigated and banished. Children fear the atypical. I harbored those same feelings as an adult. I neglected to differentiate the pattern of a child from the mind of an adult.
I no longer feel limited or intimidated because of my disability. I feel empowered and enlightened! And what better month to celebrate than July, which is Disability Pride Month.
According to AmeriDisability, “This annual observance is used to promote visibility and mainstream awareness of the positive pride felt by people with disabilities. … ‘Disability pride’ has been defined as accepting and honoring each person’s uniqueness and seeing it as a natural and beautiful part of human diversity.”
I discovered beauty in myself when I decided to embrace what I had once feared. And when I did, I never looked back.
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Comments
Leanne Broughton
i am not proud of my disabilty. Usually pride comes from an achievement, something special, a success. MS is none of those things to me.
Tom Anderson
So many MSr's are on the bandwagon of "Life Can Be Great with MS; Beat MS; Fight MS, I won't let it get me down", on and on. I suppose some of that is true.. For me, it is accepting it and treating it where possible (plus throwing in a couple of unproven approaches), learning how to talk about it when needed, and moving on as best I can, without dwelling on it. My support in life comes from people without disabilities, although I have plenty of room for them. I consider myself normal; regular; with MS. Not proud of it. I am happy about not paying my student load debt, getting a meager check for life as well as health insurance.
Jenn Powell
Hi Leanne,
Although I do not feel similarly, I hear you when you say you are not proud of your MS. I hope that one day you can feel pride in who you are. You have been through a lot with this disease and are sharing your feelings. I think that is pretty huge.
I take pride in the changes I have made with my disease, not the disease itself. This has been a long road and one which continues to have the road bumps along with the triumphs.
Just as MS disease differs from person to person, so too do our feelings surrounding it. I am sending you kindness.
Jenn
Jennifer Powell
Hi Tom,
You explain toxic positivity perfectly! I have been toxic to myself and am learning to accept my triumphs as much as the trials. I like how you say it is accepting, treating, learning, and not dwelling. I hope to take each day as it comes and be able to decipher each with as much clarity.
I am proud of how I have embraced my disability as opposed to being ashamed, frightened, or even loathsome. I once was all three. That is huge growth and something I am greatly proud of.
minimizing student debt, a paycheck and health insurance are understandably things to take pride in. Kudos to you!
Jenn
Tom Anderson
Thanks for your + reply, Jenn. And I'm glad for you, you are trying to find a "normal" life with MS (if there is such a thing). As to my last sentence, I am referring to having student loan debt (through graduate school) all cancelled due to disability- you have to qualify for SSI first, in which case you can activate medicare insurance. It was a lot easier to do after I had tried unsuccessfully over and over to prevail without assistance. Luckily, before school I had worked a lot of part time jobs, and did get a few years full time employment in here and there. So all in all, it is enough to survive; will never be taken away, and I can play around on the side if I don't do "too well." Funny how it all works. I found acceptance by others was more difficult than acceptance by myself.
Remus Punga
HELLO!
MS affects you not only physically but also mentally. When you are mentally disabled, you lose confidence in yourself, you no longer value yourself, like the human being. I can say that you live only at the level of the senses, without self-awareness. , specific to people. Not without interest is the opinion and behavior of others towards you. Their opinion affects you both physically and mentally. All these are the starting point of a depression. Depression that can mean the development and rapid evolution of the disease. These are a demonstration of the statement ... "once internalized, a conflict takes on another dimension."
I AM NOT AFRAID OF MY DISABILITY, but I accept it. The article is very good because it develops the idea of accepting disability.
SALUT!
SM te afecteaza nu numai fizic ci si psihic.Atunci cind esti invalid,din punct de vedere psihic,iti pierzi increderea in tine,nu te mai valorizezi,ca si finta umana.Pot spune ca traiesti doar la nivelul simturilor,fara constiinta de sine,specifica oamenilor.Nu lipsita de inters este si parerea si comportamentul celorlalti fata de tine.Parerea lor,te afecteaza atit fizic cit si psihic.Toate acestea sunt punctul de plecare al unei depresii,Depresie care poate insemna dezvoltarea si evolutia rapida a boliiAcesteaa sunt o demonstratie pentru afirmatia ..."odata interiorizat,un conflict capata alte dimensiunI.'
NU SUNT MINDRU DE DIZABILITATEA MEA,dar o accept.Articolul este foarte bun pentru ca dezvolta ideea de acceptare a dizabilitatii.