Disabled …Me, no ways …?

What’s in a word …Disabled  (me …☹)? No ways !!!

disabled

 (dɪˈseɪbəld)

adj

a. lacking one or more physical powers, such as the ability to walk or to coordinate one’s movements, as from the effects of a disease or accident, or through mental impairment

b. (as collective noun; preceded by the): the disabled.

Usage: Nowadays it is better to refer to people with physical disabilities of various kinds by describing the specific difficulty in question rather than talking about the disabled as a group, which is considered somewhat offensive. Some people also object to the word disabled to refer to facilities for people with disabilites, and prefer the word accessible

Collins English Dictionary – Complete and Unabridged, 12th Edition 2014 © HarperCollins Publishers 1991, 1994, 1998, 2000, 2003, 2006, 2007, 2009, 2011, 2014

I hadn’t given this much thought , I guess I’m too stubborn for my own good, too proud to admit it perhaps but for the first time this week I began to ponder … am I really disabled ?

Why you may ask, well easy really.

I have been asked to sit in on a panel to discuss , no question…no “create awareness” for the feasibility of a corporate environment to continue to employ people with both visible and invisible conditions.

Already just formatting this raises the questions , call it semantics if you will of the words chosen

Able vs Disabled, Visible vs Invisible , Ability vs Disability…Do they aptly describe the underlying condition/s ?

This definitely will need much music and a serious espresso.

This is my story…no names and places have been changed and there are no innocents involved …

Yup that was the former me, I loved my career , loved challenges , change , coffee and conversation…from travelling ( travelling didn’t quite make the 4C’s 😊), I also didn’t get the tee-shirt ?

All of that changed with the initial prognosis of those two little letters M&S …not the Marketing & Sales kind but the ones labelling an invisible ailment with zero predictability and no known cure, Multiple Sclerosis ….

For me the prognosis didn’t come as quite a surprise, I had been battling with getting the correct people (Medical types!) to acknowledge what I was feeling for several years.

 As I’m sure so many others have experienced there was just a very very very low degree of anyone actually listening and actioning.

I can’t really blame the system , I imagine there are many, many instances where easier solutions take precedence with readily available cures.

My regret is that I didn’t insist , demand and escalate my concerns , I told it like it was , no exaggeration.

Perhaps I should have inflated my experience …

Could have , maybe Should have ….Didn’t

So …that all led over a period of several years to finally , finally getting the …”Sorry , You probably have MS “ explanation.

Which brings me to my ponder for the day. I didn’t hide the news from anyone, I duly informed my organization and then reality set in.

The first challenge…although I had self-diagnosed my condition ;I really didn’t really know much more about how to deal with it , what it would mean or what to expect…and likewise no specialist could help me on that topic either.

Much like my standard operating procedure I researched the whole MS malarkey myself, several books later and countless hours of forums and medical research papers later I thought….thought I had it covered.

The short story …I didn’t.

The learning bit taught me that I had vulnerabilities…heat, humidity, food (!) ,walking , concentration, writing my name to name but a few.

Of course, the biggest hurdle was the reaction to the “medication”, intended to slow down the rapidly developing lesions on my brain…yes (that’s fairly confrontational on its own).

Medication sorted …

This was all the easy bit.

The more challenging bit was the …,What now?

Where does my working career go from  here?

Do I even have a career any longer?

Can I do this ?

And so began the process, clearly I was not 100% “able” any longer but by the same token I wasn’t “Disabled” ….was I ?

Discussions began.

According to my Job Description….. I should travel a fair percentage of my time , various countries , various clients, getting around.

 Travel = walking , walking = challenge !

And so came the realization that yes …in the eyes of a “Black&White” document I was to all ends no longer employable …for the role that I was acquired.

I was bordering on “Disabled”…

Which begs the question, How do we label people with “disabilities”?

Are we Handicapped or Disabled …

I can still …Walk…although not very far and not without a walker or a cane

I take care of myself …admittedly slowly slowly and a rest after showering is mandatory

I read…although my eyes go foggy so podcasts are the preferred medium

I type…EXTREMELY slowly but steadfast and I mostly get there in the end (when my fingers are working)

I think , far too much really 😊, but I can still…

I can talk…and talk…and talk ( although cognitive function is definitely impaired from what it was …hard to admit it but true), sometimes I have difficulty swallowing and so I stop talking…

I don’t , run, play squash , cycle or do anything outdoors that can’t be done from the seat of Helga ( my electric car /scooter)

Helgaratti…Ready to Race !

However, there is a scale , a standard to which we are compared (as MS’ers)  the Expanded Disability Status Scale (EDSS) to gauge your disability status. Black & White …just like a Job Description

My current EDSS score is a solid 6.0 (I have been better !).

I personally think the “6” is on the wrong side of Able , (better than 7 !!!) in fact just venturing out of my comfort zone requires thorough reconnaissance of where to park, terrain, stairs …everything is a planned mission. Reality is this is just the clinical indication, each individual has in adition to the “Score” all the extras’s that come with MS, headaches, mobility, balance, pain, cramps, the list goes on…and on

But…you do what needs to be done.

Of course, one could argue that this is all relative, relative to what needs to be done.

If there is a need to run a marathon …I’m out, BUT….. if there’s a need to philosophize and create a strategy proposal , bring the coffee !

Once again in a perfect world we could pick and choose where we could apply our talents , for a corporate environment …not as simple.

We don’t create job descriptions for Individuals , we hire to fit Job Descriptions was always the mantra of HR.

Is this or has this changed ?

Time will tell.

Living in a society where we measure performance relentlessly it is understandable that there is a legal aspect to Able vs Disable. In Europe the employee is usually well covered by Labor Laws and Directives that safeguard one in the event of disabling injuries …there’s that word again. Disabling.

Unfortunately with MS …there is no predictability, there is no wait and see and the decision of my company to advance to the “Disability Pension” discussion was 100% the correct one …for me.

The reality is that in the space of less than ten years I have gone from Squashing, Cyclist, Hiker to …not the above ☹.

From the onset of diagnosis statistics tell us that 50% will progress from Relapse Remitting MS (RRMS) to Secondary Progressive (SPMS) within 10 years, 90% will escalate to SPMS within 25 years.

This brings with it the legal aspect, to register for a medical pension takes time and patience and a lot of consulting. Until circumstances surrounding employment “Requirements” change it will not be easy to facilitate people with these types of handicaps from continuing to be employed.

There is no easy.

It would be awesome to be productive and contribute to an organization, the flipside is with the unpredictable nature of the MS symptoms its never a sure thing.

But still, I don’t see myself as Disabled…Impaired sure, Disabled …no….

disabled

 (dɪˈseɪbəld)

adj

a. lacking one or more physical powers, such as the ability to walk or to coordinate one’s movements, as from the effects of a disease or accident, or through mental impairment

Oh dear …perhaps I am …

Some inspiration care of Chris Kaag from the I’m Able Foundation

IM ABLE Foundation
901 Hill Ave Building 17
Wyomissing, PA 19610 
chris@imablefoundation.org
www.imablefoundation.org

The music has been streaming , an old favorite …

This has been nostalgic …but not in a warm fuzzy cappuccino way !

You’re never alone.

Published by Daniel Taylor

MS Warrior with an affinity for 80's New Wave music and deep philosophical ramblings...and coffee , definitely coffee

One thought on “Disabled …Me, no ways …?

  1. My heart goes out to you Daniel, not only for what you’ve gone through, but also for your courage and honesty in discussing your situation. I wish there was something I could say or do to make you feel better.

    I had a total replacement of my right knee a little over a year ago, which has made a world of difference in my quality of life. But for several years prior, I was in near-constant pain and my right leg had become bowlegged from the complete lack of cartilage in my knee, which was literally bone on bone. I could barely go up or down stairs or even steps, and walking, which was always painful, was almost impossible if there was an incline involved. What it taught me is how precious our mobility is, and how much we take it for granted when we’re healthy.

    Like

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