#UsToo

During the most recent publicity around sexual violence and abuse, I posted #MeToo on my Facebook account. I spent many years being sexually abused by two close family members, those attacks lasted until I was in my teens, and left my home environment for the streets of New York. It was far from safe on the streets during those years, but safer than it was living in my family home. I was alone and scared, but no longer terrorized by my abusers.

Those of us living with disAbilities are constantly at risk of sexual abuse from family members and  other “caregivers”.  Some of us have been vulnerable to myriad forms of abuse since birth. As with Abled society, many of us were left open to abuse from our parents, siblings, friends, and medical professionals. It’s a disturbing fact that the majority of us disAbled folks have been, or are now being abused during the course of our lives. So, I believe #UsToo applies here.

Prior to the onset of my disAbility, I worked in the health care field for many years. I was aware of several cases of sexual abuse perpetrated by a few of the staff members upon the very people we were charged with caring for. I often heard the accounts from patients about what X would do to them when no body was around. I always reported these incidences to the administration, and in doing so, often wondered if any action would be taken. I was directly told that after reporting alleged abuse to the administration, my legal responsibility ended.  My moral responsibility, was another matter. I would continue to watch the allegedly abusive staff member and the patient with a more critical eye. I believed someone who was brave enough to disclose abuse to me, as I had lived through enough of it myself to respect them for putting their trust in me.

Now that my disAbility has progressed to the point it is. I have difficulty moving, I live in fear that I may not be physically able to fend off someone who is bent on sexually attacking me, who touches me or my appliances without my express consent. All I will eventually have left to defend myself with will be my voice, and hopefully, someone who will have enough respect for me to listen and act. I often think about those of us living with caretakers and family members, or who live in facilities where our voices have not been heard who are vulnerable to untold abuses from those who are meant to assist us to live a dignified existence.  I fear for the day when my life will be left in the care of others. I have learned as a person living with a disAbility  and a sexual abuse survivor not to trust anyone.

So to us folks living with disAbilities, I say #UsToo. It’s time to shine some light into the darkness and have the strength to speak out. I  see you, and I believe you.

~Crip Out~

 

 

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Judgement

After a few decades of living in my body with it’s unique way of moving through the world, I have come to grudgingly respect it’s limitations.  For those of you who know where I’m coming from, or who have been reading my posts this last while, you will also know that I struggle with what my body will or will not allow, as my will often surpasses what my body is capable of.

Recently, I was out in my power wheelchair in Victoria BC on public transit on my way to a meeting. That in itself is unremarkable, as I quite enjoy being out in public rubbing elbows with folks. I met someone while on the ride who saw me use a rollator to get from A to B one day several weeks ago. They remarked that I was now using a wheelchair as opposed to the “walker” and wanted to know why I was now in a wheelchair. They wanted to know if something untoward had happened to me.  I replied that my “disAbility” has it’s ebbs and flows, I experience good and bad days/weeks/months where my body is in too much pain and my balance too precarious to move, let alone quasi- ambulate. They looked at me quizzically, and replied that it was their understanding that once you were in a wheelchair, that’s where you “should” remain. I don’t believe they were trained as a medical professional, but I may be mistaken. Irregardless, an assumption was made.

I experience this type of judgement quite often from Abled society. We the Crippled, are to remain in  a state of stasis in the opinion of  quite a few folks out there. Indeed, some of us do use one appliance exclusively, but like the diverse strata of humankind, we too are all unique.  I have had the experience of being under the unwelcome scrutiny of the well intentioned  most of my life. As my disAbility changed, and became increasingly visible, so did my use of appliances to negotiate the world. They may well change yet again as my life and ability or lack thereof progresses.

Judgements from others in regard to my disAbility, make me feel at odds with society in general, and yes indeed, angry. I am reminded every day that the “ism” is quite alive. The well intentioned assume that our bodies and appliances are fair game to touch without our consent. They assume that they can say and do things to us that they wouldn’t otherwise say or do to any other Abled person. Our “conditions” are open to their scrutiny, and suggestion as to how we could better live our lives if only we could just try X. I have corrected the Ableds assumptions, judgements and interventions loudly and often and will continue to do so.

I wonder what would occur if we were to turn the tables and begin offering the Abled public suggestions about their daily lives, i.e. how to sit, how to eat without choking, how to maintain a healthy body mass, what kind of doctor they need to consult about their Able-ism. I could go on, but I won’t. Judgement, even micro-judgement takes too much of my precious energy to attempt to reciprocate. I have meetings to get to, and people to engage with who will not be passing judgement in regard to who I should be, or what I should be doing. These people appreciate me for who I am, and what I am very capable of, without the oppressive weight of judgement.

~Crip Out~

 

Seeds

It’s disconcerting when see something that you had fought so hard against begin to rear it’s ugly head yet again.  It’s not a battle that I’d imagined I would be engaged with  yet again in my lifetime, but hatred knows no season.

I moved out to the Canadian west coast after years of living in the eastern part of Canada, being Peterborough Ontario.  While I lived in Toronto, I was a vocal opponent to the Heritage Front* (white supremacists) who marched on city hall while I lived there in the early 90’s. On that day the balance was tipped in favour of inclusion despite the efforts of a few hate mongers.  Hatred is not about balance, or inclusion, it’s about imbalance and fear. On the day of the demonstration in Toronto, I stood next to a petite Vietnamese woman who was carrying a sign that said simply, Peace Now.  Facing us across the pavement were a sizable group of angry white supremacists. We stood our ground together and sang at the opposition, until the riot police arrived beating their shields with their batons.  Soon thereafter, the mounted unit arrived, urging their horses into the crowd.  Before too long I was face to face with a mounted officers horse, as was the woman with the sign. The mounted officer advanced on us, nearly trampling the smaller woman beside me. I lifted her out of the way, as the horses hoof crushed my left foot.

Breaking a demonstration is all about intimidation. The military/police are indeed cognizant of this, as are most hate related groups as they often seek out members with military or para- military backgrounds.  Those in power, dictators and the like also understand the power of intimidation and fear. It’s easier to control a population when they fear what you may or may not do to them.  The tactics that they employ are akin to the art of war. Public demonstrations are no different, our streets have indeed become the modern battleground.

I lived in a country that was besieged with hatred prior to living in Canada. The KKK was almost always on the periphery as background noise. There existed racial tensions, murders and riots in the streets, acts of violence on campuses were prevalent in the news. The spillover came here as well. I have continued to march alongside those who are opposed to hatred of the other. Albeit, now on wheels as a person living with a disAbility.

I have had news of a hate group petitioning the municipality of my former home for permission to hold a demonstration in the center of the city. This disturbs me most profoundly, as I once lived where the action could/ would/will be executed. I find incomprehensible that any municipality would grant this group permission to hold this event. But alas, it is my understanding that it has indeed come to pass, as it has in so many other places.

I have been reading my news feed daily and have been encouraged by the news that a counter demonstration will be held in opposition to this hate groups rhetoric.  The idea that any place in Canada would tolerate hate breaks my heart. Hatred is alive here, and fanning the flames of that hatred are not only the ignorant and intolerant, but the likes of our local governments, officials and leaders. Hatred grows in a climate of fear, it’s a vicious cycle, but one that can be broken.

So to you, people of a kind and loving heart who welcome the other into your homes and communities, take back control of your power. The only way to change the dialogue is to stand firm against the fear, stand up for what you believe to be true, stand together to eradicate what is wrong. Claim your space. I believe that hatred is the product of ignorance. The seeds of hatred must not be allowed to be cultivated in the medium of intolerance. We are all living with a foot in “other”.  Being disAbled, our existence is marginalized enough. We hail from all races, religiocities and cultures.  Thus, in the final analysis, are we not  each of us then “other”? I’m thinking of you Peterborough Ontario Canada be brave. Love trumps hate…every time.

~Crip Out~

*https://en.wikipedia.org/wiki/Heritage_Front

Solidarity weekend planned in Peterborough in response to anti-illegal immigration rally

http://www.thepeterboroughexaminer.com/2017/09/30/violence-breaks-out-at-anti-immigration-rally-counter-protests-at-confederation-square-in-peterborough

 

 

 

 

 

 

 

 

Everyday Inquisitions

It’s a rare thing indeed when someone who presents as *Abled asks me about my disability. Occasionally, it’s all about the method and context of the enquiry, not the actual person asking, allow me to expand.

Living with a visible disAbility I have always been the subject of scrutiny by society at large, more so now that I use a Power wheelchair, (very difficult to ignore) As Harry Winston once said: “People will stare, make it worth their while”. Truly, words to live by. I admit, I have done and will continue to do My* part in making it worth society’s while if they consider my personage stare worthy.

The other afternoon on public transit a middle aged woman sat opposite me on the bus, she presented as Abled* but I refrain from making broad assumptions.  She asked me all about what my chair does, commented on the type of covering I have on my seat, back and armrests,(Sheepskin) and further, why I had covered my seating area in this material.  I gave her the reason, being my skin has become delicate, and I’m prone to pressure ulcers, as many a wheeled folk are. She took a long hard look at my chair again and asked me how long I spent in the chair every day. The answer being, variable dependent upon how I’m feeling and moving, or what I plan on doing on any given day.

I mistakenly thought this would conclude the inquisition, but alas, no.  Society in general piques my interest occasionally, and I tend to choose my battles with the utmost care.  This person was simply *not going to let this opportunity to interview a real live Crip pass her by… oh my, no.  I said to myself, “Self, here comes the* windup, she’s gonna do IT, you just know* she is! Pay close attention because here comes the fastball, it’s a mean ass burner of a curveball  and I’m ready to knock it out of the park.  She pipes up, “So, why are you in a wheelchair anyway?”…  See, I told you. This* was gonna get *Real.

I usually avoid talking about myself, and don’t seek out strangers to speak with in general, but this* winner found me. I was four point restrained on public transit facing off with what could arguably be a true sitting duck. Quack.  Oh my, this* was going to be JUICY GOOD! I told her precisely why I use a power wheelchair, I went into a bit of gory detail in regard to my disAbility, the pain, the glorious bouts of  agony, and yes, the glorious truth in regard to my prognosis . I also regaled her with anecdotes pertaining to the numbskulls I encounter on a daily basis.  I discussed incontinence, and my ability to choke on nothing but air. I told her I could ostensibly bite the biscuit right here and now in front of everyone, given the correct sequence of circumstances. I gave her her bus ticket’s worth alright.

She blanched and flushed as only a Caucasian can.  She mumbled, and fumbled and noises eminated from her that I don’t ever think I’ve heard before. This my friends, was a piece of unparalleled oratorical  excellence . I hit a veritable grand slam this time, Harry Winston would be proud. She appeared to have been experiencing  information (TMI) overload. I don’t know what thoughts were milling about up there in her cranium, but I thought this baby might actually blow a gasket. Suddenly she bolted out of her seat and pushed the stop button as if her life depended on it – several times.  She appeared panic stricken. ( By the look of terror that registered on her face, I done real* good.)

The bus stopped and she scampered away like scared wild thing.  I was secretly proud of myself for enlightening the *Abled* it always feels good when I can help them understand my life a bit better. An old fellow mid-bus with a cane applauded the performance heartily. Some other good hearted soul offered me half a sandwich in return for the entertainment.

I realize that I could have fired back to her question of why* I am in a wheelchair with… this: Why aren’t you?

~Crip Out~

 

 

 

 

 

Harvey

When a natural  or human made disaster strikes my thoughts automatically go to the outcome of those who were unable to get to safety. When Hurricane Harvey hit the Texas coast last week my thoughts went in a similar direction, but to the outcome for folks with disAbilities  who had nowhere to turn for help after the storm.  Now that the Trump administration is in power would the outcome for them be any different?

I have been following the relief efforts that the everyday folks have been providing in their own communities, especially that of the everyday heroes, the “Cajun Navy” and many others.  They have been busy plucking people out of chest high water and delivering much needed supplies to folks who simply were unable to get out of the way of the storm. It made me wonder about FEMA and the reasons why it takes so long after an event to mobilize help when and where it is needed most. Watching the news of the aftermath, I saw older people left in waist deep water in rest homes. It left me wondering what became of folks  living with disAbilities.

After some research into the machinations of rescue efforts in Texas, it turned out that the everyday folks had a better grasp of how to assist their neighbours and friends with disAbilities, more so that the federal programs that helicoptered in to help.  Those of us living with disAbilities have so often been left as an afterthought (and often last to be rescued) when any disaster occurs. Meaning, authourities be they local or regional simply fail to plan for us when something terrible happens.  I look at the everyday people helping out and have seen perfunctory rescuers taking peoples assistive devices (wheelchairs, rollators, and the like when they could) aboard the small boats so that the disAbled would not be left without a means to move about when they arrived at a safe place.

It’s the everyday people, the friends and neighbours, people who brought their private watercraft who have earned my respect and gratitude for pitching in to help people living with disAbilities get to safety.  It has reaffirmed my faith in humanity, and made me question whether or not there would be an effective system in place with the Canadian government if/when an event of this scope happens up here.  I think it best to create a network that incorporates governmental and social assistance which ostensibly does* exist. However, is likewise important to create our own network to also connect with our friends, families and neighbours, as clearly for us disAbled folk our best hope lies with the people who will be close at hand when it all goes south.

~Crip Out~

 

 

 

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~