Theory of Relativity

Chronic Pain is an insidious thing, often misunderstood by those who don’t suffer with it on a daily basis. I have been living with Chronic Pain in one form or another for most of my life. Big Pharma has been able to mitigate most of my pain until the past few years when My disAbility has stepped up to the plate in a larger sense. I endure pain daily, be it muscle and joint pain, nerve pain or neuropathic pain. Some days they simultaneously duke it out inside my body for attention. I resolved long ago to not allow pain to rule my life. I discovered that I had an “elevated pain threshold” according to a neurologist that I was referred to. He was astounded by the level of pain that I could tolerate without screaming. I had to explain to him that I had been dealing with a baseline of pain most of my life.

Big Pharma and I are old friends/adversaries when I was younger I was given so many types of  pain meds to control my persistent migraines. It seemed, there was no end to which chemicals Big Pharma had to offer, provided I was able to afford relief. Back then, I was foolish and naive enough to believe what my doctors told me. I was often the “trial person” for a few of the newer meds that they were trying out. Some worked wonders, others, not so much.  The chemical compounds used to control my pain often involved the use of anti-seizure meds, which left me unable to think clearly. The pain meds simply made me pass out so that I had a brief respite from the incessant pain.

As I aged, and my disAbility became increasingly apparent, I began to choke on almost anything. It scared the hell out of me, and anyone around me. I later learned that this was one of the first manifestations of my disAbility.  Choking, and Pain. This was going to be a real* adventure I told myself.  For a while I stopped engaging with Big Pharma and tried to tough it out without ant pain meds. My pain level was tolerable for about a week, and then* the pain tsunami that struck my body had me begging to die. The thing about Chronic Pain is this* no matter how wonderful the support system or “team” we are, all of us are very alone in our pain.  It’s a fact. No one else can feel your pain, but you.

I have chosen to deal with My pain differently for the final chapter of my life. I have minimalized my use of Big Pharma, (alas, there are still* some chem meds* that I must take to function). I have begun to deal with my body  on a more wholistic level since moving to the West Coast of Canada. I have been using Cannabis with some amazing effects almost daily.  I am able for the most part to manage my pain level, and am able to function like a human being most days. I do however* occasionally require a more aggressive approach, and it’s only then* I engage with Big Pharma.  I have found that I can deal with the neuropathic pain much more effectively, the migraines have all but gone.  My muscle and joint pain occasionally remain, however in using the Cannabis in place of the Pharma, I can think more clearly though I still endure my baseline.

I have been advised by the agents of Big Pharma (physicians) who have not yet been “enlightened” as to the use of Cannabis for specific Types* of pain, that I will be returning to the fold (consumers of Big Pharma), the truth of the matter is, I have never really* left.  I have simply found something that works…for me. I am so glad that I took a leap of faith, and found an alternative method for pain management. Pain is not* relative, It’s deeply personal, and it’s real.  We all deal with ourmpain in different ways with the unspoken silent courage we are able to muster.

~Crip Out~

 

 

 

 

 

 

 

 

 

 

 

 

The Making of a disAbled Activist

I was not a born activist. Not even close. Women of my generation set about changing the world around the time of the Vietnam war. (I was born in the US) All hell began to  break loose during the time of racial segregation down in the states. My first taste of activism was when Dr. Martin Luther King was murdered. I watched the Black Panthers take up arms and become a force for radical change by any means necessary back then. I remember the words of Angela Davis, Medgar Evers and Malcom X.  Racism was and still is prevalent in the US and here in Canada. I watched the events of that era unfold as a young girl and was affected by them throughout my life. Indeed, I continue to be. Black Lives Matter has brought the struggle for equality back into focus, as racism persists in our society.

My parents were of the heads buried firmly in the sand ilk. In short, if we didn’t see it, it did not affect us. But it most certainly did affect me. I remember watching the riots  and marches on my grandmother’s TV. She was not one of the oblivious. She spent a good part of World War II saving Jewish children from Hitler’s death camps.  People were losing their lives attempting to right so much of which was and still is terribly wrong.

Oppression in its myriad forms has been an issue for as long as I can remember. When I was a very young girl, I was  acutely aware of my preference for the company of other girls. I didn’t mind boys, but my comfort definitely rested solidly with those of the female persuasion. During the late 1960’s Women’s Liberation, and NOW were all over the news, women were burning their bras and marching in the streets, and were encouraging us to be “liberated” from our oppressors. While this was a positive move, women still had a long road ahead toward equality. It can be argued that even in the present day, not much has changed for women.

In the late 60’s to early 70’s Gay Rights took up the charge as Police and other people openly attacked LGBTQ folks in the bars and streets. I was becoming a young adult who identified as Queer back then. The actions of those Gay men and Lesbians directly affected me, as I was among them. Gay Rights was on the nation’s radar.  I began to become acutely self aware. If I didn’t stand up for my own rights to move through the world as my authentic self, who then would?

The 70’s gave way to the 80’s and yet another crisis descended. AIDS had decimated my community. I had so many of my friends suffer and die while the government of the day dragged it’s feet on financing any meaningful research on how to control or eradicate the Aids virus. Aids Action Now lead so many of the existing Pride Day events and marches. Silence=Death was the banner we all marched under. Gay men and Lesbians together in concert were heralding the call to action.  After caring for so many of my friends who would later die of the disease. I, like so many of us during those times, was exhausted.

I was involved in a serious car accident and was rear-ended by a drunk driver on my way to work early one morning, abruptly ending my career. Prior to having the accident, I traveled to Canada and found myself in love with the person who is now my spouse. I had no other pressing plans, nor any positive outcome for myself, as any sense of self worth was utterly gone. With the help of a friend, I sold what I could of my possessions, and began to formulate an escape plan. Within a few weeks I was on my way out of the US headed toward a very uncertain future.  I believe the effects of the accident precipitated the onset of my neuromuscular disorder, some professionals disagree alas,they don’t live in my body.

Soon after my accident, I moved to Canada to be with my now spouse. I figured, life as I knew it, was over so why wallow in deep pain of any sort stuck in a cycle of poverty? I, as many of you know, disAbility does indeed equate to poverty in the US. My condition began to make itself known in earnest during my first few years in Canada and would increase in severity as I grew older.  I found that there was not much difference between being a disAbled person living in Canada as opposed to the US. Poverty was still a reality. The sole difference being, I would not have to spend my life alone.

Granted, ignorance knows no borders. I had encountered as many ignorant folks in the US (more blatantly so than in Canada) as where I made my new home, but they were for the most part of a different ilk.  In true Canadian fashion, not as verbose as their US counterparts, but alas, the undercurrent remained true to it’s nature. My universe began to shrink as my disAbility became more prevalent. The built environment was a daily challenge, but not as insurmountable as that of people’s attitudes toward folks like me (I was then using a cane or crutch, which would later evolve into using a wheelchair). I experienced small humiliations on a daily basis, from physical barriers to my access to buildings, facilities and venues (Stairs, curbs and the like). However, the most hurtful aspect of being a disAbled person was the  level of ignorance  I encountered from other people almost daily. I began to isolate myself from society. I had often surpassed my quota for tolerance for the Abled* world.

In Canada, we pride ourselves as living in a “polite society” where we (Canadians) fancy ourselves more civilized that our friends to the south. It is my observation that while may be slightly more “civilized” and informed as a nation, societal attitudes toward those of us who are living with a disability requires a great deal of revision. Indeed I was angry and resentful that the Abled* just didn’t understand what the “Problem” was. Prior to my becoming visibly disAbled, I must admit I was oblivious as well. I suddenly realised that I was now being oppressed by Abled* society, and I was not about to allow for that, not after all I had been through and fought for in my life.

I began to get active, and educated as to how Ableism* affected me directly on a daily basis. I was in effect fighting for my life. I marched, yelled, sat and died in, raised my fist and organized with my peers. I began to fight for equal access, equal rights to employment and access to the society in which I lived.  My rise to activism came to fruition slowly, insidiously, and manifested itself with a vengeance when I realized I was the one whose rights were being denied and I was being dismissed as just another cripple by society.

I have been watching as things have been changing in the US under the new political administration. Our rights as human beings have been challenged with the threat of cuts to Medicaid. When watching the actions of the ADAPT movement, I have thought that if I were still there, I would have been among them. I applaud their fortitude. I have my own fight to remain independent on a daily basis.  I have become politically active, and loudly visible.  I sit on boards and advise on disAbility policy and disAbility rights. I still march and will continue to do so as long as I am able. disAbility does not discern between race, colour, religion, gender, sexuality (or preference thereof)  or socio- economic status. We are literally everywhere, and everyone.  My existence IS my resistance, and so it is with so many of us. Be loud, be heard, be visible.  Things will take time to change, as change creates tumult, and upsetting the apple cart makes people think, and take a look at what change needs to happen. Challenge Ableism every day. If we don’t change the world, it will remain inaccessible for any* of us.

~Crip Out~

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Adaptation of our Species

Having had use of a power wheelchair for only a few years, I have found that it was often necessary to devise work arounds for my everyday needs. Allow me to expand on that statement. The majority of the time I have found that technology still* hasn’t caught up with some of us (or, most of us).

When I was first introduced to the world of powerchairs, I learned that some came equipped to the hilt with different functions (provided one had the financial means to acquire the latest gizmos) My own chair had a couple of interesting add ons, however, I found a few functions impossible to perform from a seated position. (I  fortunately do have the use of my arms and hands).  My primary difficulty lay in reaching for buttons, knobs, handles, fumbled items,and the like. Being of the seated and financially precarious persuasion, I was forever roaring in frustration at said knobs and buttons, until I began to carry my Stick-It (my unique invention for attacking knobs and buttons) It is a retractable stick with a rubberized hook, a magnet on one end (for small metal items) and a rubber tip (for things like elevator buttons etc). I thought I was pretty slick when I made this myself, after spending hours cruising the net searching for something that ostensibly could work at what seemed like at exorbitant cost (anything deemed assistive* or medical* implies great expense). Then, I began to interact with other seated folks…

I was soon to discover that among my people*  were a plethora of makers and inventors who found themselves likewise frustrated by an Abled* world.  I was having some difficulty in using the joystick on my chair for extended periods of time and when I did, my hand would become fatigued and spasm.  I tried several adjustments to my chair, controller, and several joystick configurations, balls, goalposts etc. until one evening I was surfing the net and found a call out for a beta test of a new idea for a joystick from an engineer in Baltimore MD.  I was at my wits end.  I was losing the function in my hand overall and was not quite ready to go the head array route.  Ergonomics! eureka! of course! I count myself as one of the disAbled stubborn Mules who could tough anything out… (until my hand and shoulder locked up for a few agonizing days) I contacted the person and agreed to test his product out. I now can’t imagine my life on wheels without it.  Thanks Roll Geek*, you saved my sanity, and my hand.

In my journey on wheels I have found so many brilliant folks on and offline who have created devices and modifications that have made my life a happier place.  Indeed, I have interacted with “assistive device dealers” and their ilk, but I must say, thus far it’s the other disAbled folk I encounter who are the finest source for adaptive ideas.  We are a community of makers, we understand our own challenges better than anyone else out there.  Not to discredit the professionals who do their work, (my joystick handle creator is an engineer) as some of them live with disAbilities and really get the picture.

One person I interact with has developed a retractable wheelchair canopy. I have seen safety lighting, durable wheelchair storage bags , positioning bolsters and seating, adaptive external electronics and lazer modifications, the list goes on. They say if you want something done right, you have to do it yourself. I have encountered such brilliance rolling along in my chair.  People indeed are our greatest resource. My advice, if you see something brilliant, that someone else is using, ask them about it. You may be speaking to the inventor of the best adaptive device you ever imagined.

~Crip Out~

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ten Things…

Things I wish the Abled*could know about people like me, who live with a neuromuscular disorder / disAbility.

1. I am not your inspiration, nor am I your cause.
2. I am not your mascot, or a posterperson for, nor the absolute authourity on my particular disease, nor am I the expert on anyone else’s.
3. I have my own dreams and ambitions. Respect them.
4. Respect my personal boundaries. I respect yours.
(that includes my wheelchair or mobility device/equipment or my service dog etc. so touching anything I have going on over @ here* requires my express consent). Otherwise, it’s called assault and yes, I will press charges.

5. I can see and hear you perfectly. Address me directly. (Unless I’m ignoring you). You may be surprised/shocked by my reply, I’m not a toaster. I’m a human being, just like you.

6. No,I don’t know your sister’s friend X who also uses a wheelchair. (But if she’s hot* and likewise inclined* and I happen to be single* at the time*~ maybe you can get me a phone number? 😉 )
7. If I need help, I can ask for it. Conversely, if You need help, you can ask me too.
8. You can pray for me if you have the burning desire to do so. In my experience, it won’t change my reality. No, I didn’t do* anything to deserve this condition that you may believe was punishment from some vengeful entity, but If that’s what floats your boat, knock yourself out. (just don’t touch me, or make me run over you with this big black chair).
9. Yes, sometimes this* hurts (beyond belief) but what hurts more, is Ignorance… That* hurts everyone.
10. No, I never imagined I would ever look this fabulous. People stare. I do my utmost to make it worth their effort.

 

~Crip Out~

disAbled Hierarchy

Being that I may or may not have been disAbled at birth,  (according to some* I certainly was) therein lies a tale.  Since my disAbility had not affected me, nor became evident until later in my life, I have a foot in two places in regard to what is known as the disAbility hierarchy, or spectrum.

My mother was prescribed DES (diethylstilbestrol) while I was in utero, which ascribed me with a series of problems on a cellular level.  Thus, I was technically born disAbled, although the pathology would not directly affect me until my late teens.  The other shoe would drop just before menopause, when  suddenly a nasty congenital neuromuscular  issue began it’s assault on my body.

Allow me to explain, there exists a disAbility hierarchy within our community. It is something that a few of us* are willing to acknowledge the existence of. It is insidious, it divides us among our peers. It is for the most part unacknowledged, yet does in fact exist.  There are indeed Crips who discriminate among Crips.

This is something I discovered over the course of my lifetime as my disAbility evolved and has caused me to lose my mobility.  Early in my adult life I was involved with a few “support groups” for people like me on the premise of finding support for ourselves in the “community” (being ourselves* and those who would ostensibly support us).  In those groups were occasionally people who lived with varying disAbilities within one diagnosis.  This* is where it becomes complicated. Some of us exhibited outward physical issues, and manifestations of our diagnosis and some did not.  At the time, I did not.

Being that I appeared “normal”though I was living a life filled with chronic pain, I was outright informed that I did not belong among the  group, although I shared a common pathology.  I did not use an appliance (yet) did not have many corrective surgeries (yet) nor did I have any visible physical deformities (mine are not visible).  I felt betrayed by what should have been a supportive environment.  I was not on the same point of the disAbility  journey, according to the other people in the room. Needless to say, I would never return for “support”.

Later in my life I screwed up the courage to attend yet another “support” group for disAbled Lesbians at the local GLBTQ Community Centre.  While the group was diverse and more accepting of who I was it soon disbanded and fractured off due to lack of attendance and funding from the community centre.  It could have been a positive and supportive space had the group survived past it’s inception, but alas, the disAbled hierarchy became apparent a few meetings in.

Now that I have aged and  I now rely upon mobility aids, (wheelchairs and other appliances) my disAbility is blatantly visible. I experience far more chronic pain and am losing function by millimeters each day.  I now need the supports in place that I sought out years before.  I  am approaching my senior years and am living at the opposing end of the disAbility spectrum.  I have become more active in my community – volunteering, sitting on boards, and have begun to involve myself in political action and change. I have yet to join any support groups, but if and when I do, I hope that the world has changed a bit and  people have become slightly more enlightened. I will not judge nor be judged by my peers on whether I am disAbled enough to be in the same room.  The way I see it, we are all in this together.

~Crip Out~

 

 

 

 

 

 

Ableist* Attutudes

How is it that I’m not functionally disAbled until the moment I leave my home? (Not that it’s a Bad thing I’m a very Proud Radical Crip) I have had to make so many modifications to my home and personal environment over the years to make my life possible (occasionally I have invented where there are no modifications available, or affordable). I’ve been very fortunate, I realize this.

The true problem begins when I leave my home environment and am faced with so many barriers (not just physical built environment i.e. stairs, curbs, and the like) The most debilitating barriers I face on a daily basis are attitudinal. Most notably from “professionals” i.e medical professionals,and those who should be more enlightened, but aren’t. Fear and ignorance,discrimination, judgement, and assumptions about who I am (or Should* be) from the folks I meet on a daily basis occasionally take a piece out of my soul. Ignorance is the most debilitating of disAbilities my friends, and it’s pervasive.

This is why* I do the things I do, and attempt to educate and inform. But even SuperCrips like me get so very tired of it all.

~Crip Out~

Invisibility

Chronic Pain, you are No friend of mine.
No matter what “new modality” or “treatment”. I have yet
to encounter any “support group” that will allow for or support screaming as a coping mechanism.

Perhaps the loneliest feeling is that no one outside of those of us
who live with a certain level of pain understand how it comes to control our lives. Our friends think we’ve fallen off the planet because we don’t socialize. Our families see its effects and fear we’ve fallen into a depression (which many of us do). Our partners suffer from caregiver burnout and have their hearts broken watching us become increasingly isolated.

I am angry at my pain. I have given up “talking” to it. My pain is not reasonable, nor is it something I’ve “earned” by abusing my body. It is not a badge of honour, it is a component of pathology. The disease lay dormant within my genetic code like an invading force until it was ready to unleash it’s fury. It has a language that only I can understand. When it becomes uncontrollable, my only recourse is to isolate myself and make an attempt at medicating it down to a level I can function within.

Chronic pain has not made me brave, nor has it built character. I feel, (like so many of us) that it has made me invisible. Medical practitioners are not taught to effectively deal with nor treat chronic pain. We are often dismissed as a psychiatric referral. Living with pain has taught me so much about the person I am at my core. I am stronger than I ever knew, and more fragile than I ever imagined possible.

 

~Crip Out~

(In) Visibility ~ Act Two

Having achieved most of what I had set out to do from my young adulthood onward, I was reasonably satisfied with my life’s trajectory.  I was doing well, had found an almost stable relationship, and was working away at my career.  The migraines would disappear for a while, only to return with a  blinding vengeance.  I found myself in a hospital one afternoon after being brought in by ambulance, as one of my girlfriends had encountered a pile of me lying on my kitchen floor.  I would later learn that I had a TIA (trans ischemic attack).  aka mini stroke.  I was kept in hospital for all of three days after being subjected to a litany of tests. The conclusion being that I was a lucky girl. (sound familiar? It gets better) I had a fluke of an attack and my blood pressure must have been higher than normal etc.  (According to medical science) I should be just fine to return to work asap.

Thinking I may have dodged a bullet, I continued where I left off and worked my usual overtime shifts at the hospital. That is, until I received a phone call from a neurologist that I had been referred to for follow-up.  Apparently I did indeed have a brain injury on the left side of my head (as well as some unique facial scaffolding) as they found some old scar tissue and…a vascular anomaly and a section that he clearly described as leakage.  I thought this was just great.  I questioned what all of that meant, and what was to be done etc. to which he replied “Two choices, wait and see, or referral to another specialist (surgeon) if the symptoms of your TIA become unmanageable (meaning loss of speech, sight.hearing or unusual incidences of falling”. I see, so like a stroke…groovy.

Having all of this to consider, I did what I thought was best and went directly back to my career and busy life.  A day came when I was at my desk at work talking to a client when I completely forgot who they were, and why I was talking with them.  I dropped my coffee into my lap.  I checked in with myself, and wondered if I was having a seizure, a stroke, did I have a migraine now?  Being that it was almost time to leave work for the day, I canceled the balance of my appointments and made my way home.  I called my neurologists office and left a message, then called a friend who drove me to the emergency department.

I was a familiar face to some of the folks who worked in the local hospitals ER.  I described what had happened to me in the best detail I was able, informed the intake nurse of my recent TIA, neurologists name and the medications I was taking.  The list included a medication for hypertension.  After a few minutes I was seen by an intern, then by another doctor, and then by a “specialist”  all agreed I was having yet another migraine attack, gave me the requisite medications, shuffled me into a dark cold room in a side alcove and let me lie there for what may have been a few hours.  I couldn’t tell, as I was not walking on this planet any longer due to the meds they had given me.  I was released a short time later with a referral to my neurologist and family doctor for a medication adjustment.

After seeing my family doctor, and my neurologist I was told that I was hypertensive, and had my meds doubled.  That seemed to do the trick, as I went back to work the next day.  I felt so great! Never better…except for this nasty issue with my right hand, occasionally my hand and arm would not obey my brain’s commands and let go of almost anything without warning.  I phoned my doctor, and informed him of this new development, he informed me that “Occasionally delayed paresthesia and numbness occurs after what you’ve been through recently”. Groovy I thought, now I’m going to have to invest in a medical reference course. “But on the bright side, you’re young, and this may take care of itself”.  I felt betrayed and alone, and angry that this was happening to me, and I was becoming just another woman with strange headaches…just like my mother?

~Crip Out~

 

 

 

 

 

 

 

(In)Visibility ~ Act One

After having had a definitive diagnosis from a specialist regarding my “condition” I began to feel diminished somehow.  Allow me to explain, being that you are aware that I was previously “Abled” meaning, that I appeared and functioned as an able bodied person for years.  I was a strong athletic woman who could work hard and play hard. I was a rock climber, cross country runner, and avid outdoorsy type of person. I loved dancing and and had an active life.  I had a solid university education, and held down a very demanding job.  I thrived on the stress and challenges of a  fast paced career

I was visible to the world and to myself (I believed) I went out there and made a difference for the people I worked with. I was in a word, a force.  I was fortunate enough to travel when and where I pleased, had my share of good and bad relationships with diverse outcomes.  I was fully and completely alive and able to move through the world with very little standing in my way.  I had married twice, and with my spouse helped raise  a child into adulthood, I was as happy as I could be.

Then one day, I started dropping things, maybe I was overtired?  I regularly worked eighty hour weeks in healthcare.  I occasionally held down more than one job.  I became dizzy for no reason.  I ate. I slept.  What the hell is wrong?  I had a history of violent migraines.  I was involved in a  car accident when I was young in the days before  seat belts were used.  I hit the windshield of my drunken father’s car when he tried to stop for something in the road, I hit it with my head, then my shoulder and the rest of my body followed. I had a head injury  that would take years to right itself.  In the interim, I dealt with severely debilitating migraines. They made me want to die each and every time I had one.  They don’t consider migraines a disAbility, do they?

I got patched up, I was told that I was one lucky little girl, and that I should be grateful for the miracles of modern medicine.  I was told I had the best* doctors that were leaders in their respective fields.  I looked almost normal after a year and a half and many facial surgeries.  Skin grafts, new* cheekbone, eye socket reconstruction, dental surgeries and oh yes, those small neurological problems. (not worth mentioning, as I would apparently outgrow the pain in time, so the adults around me said). Back then*western medicine wasn’t  as sophisticated as it is today, and they just didn’t listen to children who said they were dizzy and felt ill.  Just another one of “those” headaches …women get them you know.  I felt myself beginning to disappear.

My early adult were eventful, I completed  university and was fortunate enough to have found  a decent  job in my profession. I had lesbian relationships that ran the gamut that relationships did back then.  I worked hard, slept little and led a very visible life.  I was doing all the “right things”  I had a great job, vacations, friends, partners, played sports,was  politically active and always busy. It was a time in my life where I was as alive and active as I’d ever been.

The headaches persisted.  I had seen several family doc’s who said my migraines were hormonal, and proceeded to write scripts for some pretty heavy meds, narcotics, muscle relaxants, and even for a brief while, anti convulsants.  Others prescribed psychotherapy, believing my pain could not be rational. The pain often became so unbearable that I would stagger into the nearest hospital emergency dept and either scream, cry, or pass out from the searing pain in my head.  They would pump me full of narcotics, muscle relaxants, and anti nauseants, allow me to  pass out for a few hours, and then let me go home.  I was losing pieces of days, and weeks…and of myself.

~Crip Out~

 

 

 

 

 

 

 

 

 

 

 

 

 

Thoughts on Ableism*

There exists a term called  *Ableism defined by the Urban Dictionary* thus: Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.

That being said, Most of us “Crips” (slang* for disAbled folk solely used amongst our peers) Experience this phenomenon on a regular basis.  It affects us in any number of ways. I choose to make Ableist moments teachable moments when and if I have the chance to do so.  Hopefully my re-education will have some lasting impact upon the ignorant.

Case in point, just today I had someone ask me where my “friend” was.  Let’s frame this a bit better for illustration’s sake.  Admittedly, I am not a Gold Star* Crip.  I may or may not have had my disAbility since birth, but the onset struck hard and fast when I turned fifty. Sometimes I use a rollator (rolling walker) but predominantly I use a power wheelchair that I have wrestled into submission by tweaking the power, settings and programming. Indeed, I confess to being a geek*.

Alas, I digress. I was at an open air artisans market that I had gone to only once before today and a woman I certainly never met previously came bounding up to my right side and grabbed my elbow hard enough to make me wince and said,”Where is your friend today? Are you out here by yourself? Can I call someone for you?”  I was so momentarily stunned that I let go of my rollator and almost fell flat.  I had no idea who this person was, why she had grabbed me, and the reason for the volume of her voice at that moment.  It was like my very own personal Tsunami.  She went on to say”Where’s your Friend?” Now, I happen to have a lot of friends, but I just couldn’t understand why she was repeating herself here.

I went to the market with my friends, was supposed to be meeting them later at a restaurant. I had my cell phone in my purse, and indeed, I was alone, very happily so until this stranger accosted me.  “My friends are waiting for me at the restaurant, I have my cell phone, I can call them on my phone, see? This is my phone. I can text them too. Now, please let go of my arm and stop yelling at me like this.”  To which she replied “Oh no! you’re not Margaret at all! I am so sorry! You see Margaret looks a little like you and she’s really deaf and has Alzheimers.”  I replied, “Alright then, since I’m clearly not Margaret why did you grab me like that?”  My new grabby buddy replied,”You have a purple walker thingy and you walk funny…uh, I don’t mean funny ha-ha, but off balance and from the back I thought…”  I looked at her and replied, “So, we look alike then?”  Grabby sputtered “Um yeah you all Look alike kinda middle/older wobbly with walkers, I try to help where I can, I mean all of you handicapped people always need help, right?”  I thought I was going to have an aneurysm right there on the spot.

“First, I am a fully independent adult woman who just happens to live with a disAbility that is clearly visible. Second, when you put your hands on my* body, or my appliance that constitutes  assault. Thirdly, I do not knowingly have Alzheimers, but may become hard of hearing in my right ear thanks to your “intervention” thanks.  I’m going to see my friends now, so good luck with finding Margaret.”  I rolled away bruised but not broken hopefully some light has crept into the darkness of someone’s very small  mind  who thinks we* all look alike.

~Crip Out~