The illusion of ADA disillusion…

Just as every human is different, the same holds for the people with disabilities in the world.  You can call me differently-abled, a disabled person, or a person with a disability; just do not call me late for dinner.  However, we are all like snowflakes meaning no two people with disabilities are the same.  This fact means if you plan to invite us to join you, it is best to make preparations and include us in the planning as we know our requirements.  Every person with a disability struggles differently, creating a brutal battle to make inclusive plans for everyone.

I called to make an appointment at a law office and learned that I must ask for details after my inquiry.  I asked the receptionist if their offices were accessible, she replied, of course, like I was asking if she can cut her food.  Her quip after my follow-up query quickly put me in a quandary as I was puzzled.  I clarified by asking if there are steps to access her facility, and she said, yes, we have a flight of steps.  This situation reminded me once again that most people have no idea what ADA truly means or even who requires it.

If you have never used a wheelchair from the seated position, you probably have no clue about the needs.  Us wheeled warriors are not merely asking for things for the cool factor but because they help make our lives more independently manageable.  Then I rolled up next to some steep steps with a ramp that was just as steep next to it, and I was disappointed.  I understood that the organization who built this ramp had never used a wheelchair and probably never saw one in action.

I pondered my accessibility options when I rolled into the bathroom of this fast-food restaurant.  I went into the accessible stall and found the grab bar was missing, and it appeared it had been gone for a while.  I spoke to the manager, who said it recently came down, and they were waiting for the repairman to rehang it.  I bit my tongue and said nothing even though signs showed the contrary to his claim for this missing mechanism.  I returned several months later for lunch during another outing and saw the grab bar was still down.  This golden arches facility should be ashamed of itself, yet sadly, there is no enforcement for the truly non-existent requirements. 

I rolled into the neurology clinic to see my neurologist as I had no health insurance.  After my appointment, I needed to use the restroom before the car ride home.  I opened the bathroom door, and the room was set up very well for a wheelchair as it was a large room with one commode and sink.  I would expect nothing less from a hospital neurology clinic where many patients use wheelchairs.  I held the door with one hand, and with my other hand, I began to try to push myself into the room with no luck.  A woman saw me struggling and held the door for me, and I continued to struggle for several minutes with no progress.  This is a hospital, no less with an ADA compliant bathroom on the inside but no way to get through the door.  Let me clarify that I had a narrow chair, and this was a hospital. 

The following is my understanding of the rules laid out by the Americans with Disabilities Act of 1990 as it was explained to me.  The ADA regulations are mandated for government facilities and only suggestions for everyone else.  Private property like restaurants and shopping malls are not required to implement these standards.  Do not get me wrong to be inclusive to all potential customers; most companies wisely use these standards.  However, some businesses apply these orders more loosely as they do not want to spend the needed money.       

So when you visit a non-government building, and the accessibility options are few and far between, stay calm.  At this point, find the manager and explain what is missing and the benefits to many of said item.  They probably do not want to spend the money on every medical device out there but explain your reasoning, and hopefully, they will acquiesce.  If they understand how the equipment would help many possible customers, it only makes sense to buy it.  Sadly, we have to poke and prod for some companies to do the right thing, yet I hope in the future things will just be.

Afternote: To all those who do not use a wheelchair, you may have empathy for us wheeled wonders, but your understanding is more important.  Merely being around or even living with an individual using one of these mechanical marvels is not enough to teach you real knowledge.  I have recently seen many videos on Youtube of people taking the wheelchair for a day challenge.  I saw a video of a woman who uses a chair, and her long time husband took this twenty-four-hour dare.  He was amazed after how much his knowledge grew after experiencing life from the seated position.  Think about it this way: How much can you learn about driving a car sitting in the passenger seat?  If you dare to take the wheelchair for a day or even half a day challenge, let me know. I would love to hear from you about your experience.   

People with disabilities want to be welcomed too.

Possession Obsession…

I found true beauty in the love of my life, and she has grace and elegance like none before her.  My lovely has a poetic symmetry allowing for smooth Fred Astaire-like movements while having Marilyn Monroe’s curves.  This glamorous Venus enables me to be myself while helping to keep my independence.  However, to receive this gift from the heavens was a difficult battle from the start.  To obtain this alluring artistry, I needed real fortitude and strong tenacity as the dissension was discouragingly disheartening.  Allow me to tell you the story of getting my first fantastically fitted and life-altering wheelchair.

My first wheelchair was a standard hospital-style wheelchair I received from a donation program.  The guy from this awarding agency told me ninety-nine percent of their requests are for power wheelchairs.  He explained they would not ask for my donated chair back and I should plan to keep this heavyweight hand-me-down.  This chair was sixty-five pounds and folded but did not disassemble, and its size and weight made it very difficult to put into most vehicles.  Although my mom often exercises and is relatively fit, she struggled to put my chair into her SUV.

After a lengthy discussion with my doctor, she prescribed an ultralight wheelchair.  I took the prescription to a local seating clinic, where the discouraging part of the story begins.  I rolled into the clinic in my wheelchair that was oversized and ill-fitting for my greatly gaunt body.  They helped me sit on a slightly padded table to begin to take a plethora of body measurements.  This assessment ensured this chariot would fit me comfortably because, as they say, measure twice cut once.  Someone using this personally sized chair for such a long time needs anything encouraging complete comfort.

As a thirty-eight-year-old man in relatively good health, her next statement threw me for a loop.  Not talking to me about my options, she merely asked what I was looking for in a power chair.  We did not discuss the benefits of different styles, so there was no mention of the option of manual wheelchairs and their advantages.  I quickly spoke up and vehemently said I wanted a manual wheelchair.  She explained to me power chairs are much easier to pass through Medicare.  I explained how that was nice, but I reiterated fervently I wanted a manual wheelchair.

After way too much coaxing, they lowered me onto a manual wheelchair that loosely fitted my frame.  This temporary chair was used to test my mobility ability and my strength to self-propel.  I was too stubborn to say, uncle, as I ran through the paces up and down a ramp and over several speedbumps.  They doubted my conviction and continued to challenge my endurance by having me push myself down a long hallway.  This relentless testing proved I am a bullheaded Marine who was unwilling to back down from this exhausting investigation of my capabilities.

My current wheelchair is custom-fit for me and only weighs just over forty pounds.  This lack of bulk allows me to propel myself in most places while not feeling like I am pushing a tank.  The chair disassembles and reassembles with ease and can fit into vehicles from super small to the sizably substantial.  The tires have airless inserts eliminating flat tires or needs for manual manipulation of an air pump.  It has indeed helped me keep my self-reliance and lengthens the list of places I can traverse.

I have been successfully using a manual wheelchair for nine years and even completed a 5k in this seat.  This seating professional should have focused on my physical needs and not her financial wants.  Sadly I believe there are plenty of kickbacks to pad bank accounts nicely.  If you are a person who needs a perfectly precise power chair, there is no question you should have one.  However, I wonder how many people were emphatically encouraged to get a power chair they did not need.  The greed in society is powerful, prevalent, and problematic, and I do not know what we can do to resolve this issue.

Unfortunately, people become self-focused many times in this world, asking themselves what they can gain from this.  This me-ism based world can truly hurt those in need and benefit those looking to get just a little more for themselves.  We must be diligent in knowing what we need to be heroic and heard the reasoning for our desires.  Most importantly, we need to be courageous, ask questions, and stand firm in defense of our ideals.

Be strong vocally and get strong physically.

The murderer deep within…

I often get questions from strangers about my multiple sclerosis and even my wheelchair life.  I do not mind answering the inquiries people have because the only way to learn is to pose queries and get the FACTS.  I fear the alternative, which is that people will assume and fervently spread these untruths everywhere.  These are the most common questions people do not hesitate to ask me while in public.  I felt this blog entry would be a good time for a question and answer session to help my readers understand me.  Please be aware that these responses are mine alone, and no one should compare me to any other MSer or wheelchair user they know.  As I said in a previous post, all people with disabilities are exactly different, so we are consistently inconsistent.  After twenty years of battling MS I feel I am killing it.

Why are you in a wheelchair?  I am in a wheelchair because I love the handicapped parking.  The real answer: I was diagnosed with multiple sclerosis in 2001, which has negatively impacted my legs since 2012.

Will you get better and go back to the way things used to be?  Currently, there is no known cure for multiple sclerosis, nor is MS a death sentence.  The only thing I will do is continue eating relatively well, exercising, and living my life to the fullest. 

How did you feel the first time you went into public with your wheelchair?  I was full of shame, embarrassment and I felt that everyone was looking, staring, and judging me as if my picture was on a wanted poster.  However, that is no longer the case.

What are the frustrations along your day?  There are devastatingly disheartening developments to my MS and wheelchair day quite often.  The most significant issue is how every part of my day is simply significantly slower, making the idea of rushing or spontaneity as likely as seeing a live purple unicorn.  I usually feel like a turtle on his back, often struggling to make simple moves.

Are people compassionate or insensitive towards you and your wheelchair?  I would say you have those who are kind or sympathetic and always willing to help.  However, occasionally some individuals hate themselves and want to tear down others to make them feel as bad as they do.  I let negative comments roll off like water off a ducks back and use my reply to say something positive or simply smile.

How do you feel about people touching your wheelchair?  That depends on the situation and the person, like are they, friend or stranger.  I have seen strangers act impatiently push my wheeled cohorts chair away because they could not wait twenty seconds till my friend rolled away.  I will not hesitate to speak up and even run over their toes.

What are some things you used to take for granted that is more difficult now?   I would say moving through life, I did not have to think before my seated situation started.  Now I have to think and plan where I am going asking questions like is it accessible?  There are so many questions I must answer pre-event now.

Do strangers ever stare at you or ask you strange questions?  Some people do stare, but I smile a lot and say hello, which sometimes sparks conversation.  In the beginning, I would occasionally get odd questions, but I do not mind.  I prefer they ask rather than assume as it is better to spread facts, not falsehoods.

Do you get mad when you see people who are ambulatory be lazy?  Sometimes, I have a few pet peeves, like how some individuals shuffle and do not pick up their feet when they walk is a big one.  It drives me bonkers, but I keep it to myself and say nothing when I see or hear it.

How do you feel when someone says you’re an inspiration? Here is the thing it is all about timing.  Let me explain: if you meet me on the street and in a few seconds you say I am an inspiration, in my opinion, you are just pandering.  Give me a chance to earn that word and not merely because I got out of bed this morning.  Genetics does not make me an inspiration.  To be honest, it makes me feel like you are actually saying, I am so happy I am not in your shoes like I am less than.

As a person with multiple sclerosis and in a wheelchair, I hope this shows I want to be just another person.  I do not wish to be treated with kid gloves or talked down to like a kindergartener trapped in an adult body.  You may use your legs to ambulate, but I use my arms to propel through life and merely want equality like everyone.

I use a wheelchair.  It is not who I am. It is just how I get around.