Dispelling Disability Myths

Recently I had the opportunity to speak to a Cub Scout group, boys aged 10. Turns out their June focus was learning about people with disabilities.  For me this was the perfect venue – my love for kids combined with my expert knowledge about being disabled.

With this age group, I could see a clear struggle between what they were thinking and what would be appropriate to ask and how to ask it.  The kids were predictably age-appropriate when they saw me for the first time.  Let’s face it – sitting in a wheelchair and missing 3 limbs looks really disabled to all people, especially a 10-year-old.

First of all, I will say it again – kids are honest.  Ten-year-olds are just young enough to show their disbelief, trepidation, uncertainty, and yes, even shock but old enough to know they must be polite.  I could see the questions swirling in their minds.  Moments like these are so easy for me.  It is no challenge to guide kids through this awkwardness and help them understand that their reactions and questions are perfectly normal.  I explained that while I do have a different body and must do things differently, I can still do lots of things.  I am just like them, just in a different body, not so mysterious at all.  They were definitely surprised when they learned that I went to college, learned how to drive and swim, got married, and had a job.  After a few minutes, they relaxed and became much more engaging with me. 

There was no need for me to prepare for this meeting.  I didn’t have my usual public-speaking anxiety.  I knew the kids would lead the discussion, and I knew just how to get them started.  Taking some advantage of the fact that I looked very disabled, my first question to them was “What is the very first thing you think of when you see a disabled person?”  Quickly and simultaneously, two of the boys asked, “How can we help them?” and “How do they do things?”  See?!!  A perfectly effortless place for me to start!!

I first quickly dispelled the notion that disabled people inherently need help.  I told them to treat disabled people just as they would anyone else and never to just automatically assume that help was needed.  If someone needs help, they will ask.  Assuming that help is needed based on looks alone is rude and demeaning. 

Next I approached the question, “How do they do things?”  I told them that disabled people are real people and that they are experts at adapting.  I explained using an example of the meaning of adapt – like the blind not reading with their eyes but with their fingers.  The important thing is that they can read.  It would be wrong to assume they couldn’t read just because they couldn’t see.  Doing things differently might take longer to do, but the disabled almost always find a way.  While some things may look hard to able-bodied people, many times, it’s not hard at all for the disabled person.  The kids were noticeably surprised when I told them all the things I could do, things that weren’t so hard at all for me.  I explained that they should never make assumptions about anyone ever based on how they look, no matter if they are disabled or not.  Slowly, their uneasiness melted away and they began to understand that I was not that mysterious at all.

Kids are my favorite audience.  From this experience, I realized that my efforts are best focused on the younger population because teaching them young is the best way for future changes in adult behavior.

Tired of the Lawsuits

I have been disabled all of my life.  All 61 years.  I feel eminently qualified, therefore, to speak on the issue of accessibility or lack thereof.

Due to my disability, and for no other reason, there are activities and sports I cannot participate in, places I cannot go, and careers I cannot pursue.  This is virtually never due to lack of accessibility.  It is solely and entirely due to my 3 missing limbs and use of a wheelchair.  More directly, my disability imposes many limitations.  It always has and always will.

Discrimination claims are all too common these days.  It is so tiring.  My discussion here will focus only on claims of discrimination against the disabled.  Most of these too are tiring, and I am often embarrassed by them.  Constant claims of injustice often lead to an indifferent audience; e.g. the ‘crying wolf’ analogy.

For example, once again, there is a lawsuit against Disneyland for not properly accommodating their disabled guests.  Honestly, my initial response was an unsympathetic “now what?”  Don’t get me wrong.  I am all for equality.  I am all for no discrimination.  I am all for civil rights.  I am all for the disabled sharing in the world just as anyone else.  I am also for understanding that things are not the same as anyone else.  I am also for realizing the limits, accepting with dignity what I can’t do, and understanding that the world can never realistically accommodate my every need.

I appreciate so much the past efforts of disability advocates in getting the Americans with Disabilities Act (ADA) passed in 1990.  Lawmakers agreed that major changes were badly needed.  Realizing that there were challenges in meeting ALL needs, the agreed goal was to serve the largest percentage of the disabled population as possible.  Gradually, there was a significant increase in the number of ramps, bathroom revisions, handrails, sign language interpreters, braille signage, and modifications to public transportation, hospitals, restaurants, hotels, schools, and sports stadiums.  Indeed, the ADA profoundly improved the quality of life for countless people.

As anticipated, some disabilities did not benefit as much as others.  Sadly, this will always be true no matter how much is done.  For example, I personally need a toilet with a handrail on the right.  Many times, the handrail is on the left or in the back.  Neither works for me, rendering usage of the toilet impossible.  I must realize this possibility before I go out.  I must adapt.  I must have an alternate plan.  Before you think that putting a handrail on both sides is an easy answer, it is not.  Even attempting to do so would make it harder or impossible for someone else, particularly a wheelchair user.  While this handrail issue poses limits for me, it would be foolish to stomp around claiming that the ADA did not address my needs.  It is totally unreasonable to think that every single special need can be, or should be, addressed.  It is simply not possible.  Thus, it is up to us, the disabled population, our family and friends, to find ways to exist in the world.  We must find ingenious and clever ways to adapt.  We must accept that sometimes the alternatives may momentarily wound our dignity.  However, in the end, we must always focus on what we CAN do and not so much on what we can’t do.

The Disneyland lawsuit alleges that some disabled patrons can’t enjoy the theme park.  First of all, I wonder how anyone can enjoy the park with the incredulous admission fees (currently $99) and insufferable long lines but, I digress.

I have been to Disneyland many times, and I have always felt that they accommodated the disabled superbly.  If one thing didn’t work, they tried another.  They once had a reduced price for a disabled person if they said they couldn’t get on the rides.  This was handy for the elderly too.  Of course, they had no way to regulate this once inside the park so it didn’t take long for some to take advantage of the reduced price and it was discontinued.  Then they allowed a disabled person and their party to go to the front of the line.  Incredibly then, unusually large groups of people claimed they were with a disabled person.  Sometimes, a group would even rent a wheelchair for one of them just so the entire group could go to the front.  Again, this was stopped.  Disneyland then allowed a disabled person to wait at the front of the line for their party to get to the front.  For various reasons, this too was stopped.  It is disappointing that so many people deemed having a disability to be some sort of advantage.

Disneyland, other amusement parks and public places have made significant modifications for the disabled.  Despite this, the lawsuits continue.  The current one against Disneyland claims that autistic children have trouble understanding the new “line policy” (get a time and come later).  This seems senseless to me.  Parents of disabled children (autistic included) should know their child’s limits and not expose them to avoidable frustration.  They might even be too short to ride so preparing them ahead of time for this possibility is prudent.  It would be ludicrous to claim that the ride company did not consider short kids.  Disabled adults should also anticipate the limits they may face.  Pregnant women and the elderly also have limits.  For me, I must always anticipate that possibly NO bathroom will have a handrail on the right.  Thus, it is my responsibility, and mine alone, to have an alternate plan before I go or maybe not go at all.  Unfortunate?  Yes.  Unfair?  Yes.  My reality?  Yes.

More and more people claim to be disenfranchised every day, which makes it more and more difficult to adjudicate legitimate claims.  I have seen assertions that all restaurants should have higher (or lower) table heights for disabled guests.  How high?  How low?  How many tables?  For which disability?  I have seen demands that bathroom stalls in every public bathroom be large enough to accommodate an adult changing table and 3 people.  I find both of these unreasonable.  The key word throughout the ADA law is “reasonable.”  By definition, reasonable means “fair and sensible, being in accordance with reason.”  

There are as many individual disabilities and special needs as there are disabled people.  It is not reasonable, certainly not even possible, to accommodate every single need of every single person.  In the end, it will always be up to the disabled person and/or their family to find resourceful ways to face challenges that the majority of the population quite frankly simply does not face.  It is not fair, it is not fun.  It is unfortunate and sometimes even depressing, but it is no one’s fault.  It is ultimately more productive to adopt an attitude and behavior of meeting challenges graciously and not placing blame for what should be done.  It is infinitely more gratifying to meet challenges head on, to have realistic expectations, to accept what cannot reasonably be changed, to focus solidly on what IS possible, and yes, to be grateful for the changes that have been made. 

There will always be challenges and limitations for disabled people.  There will always be special needs not met.  There will always be unfortunate and unfair circumstances.   How one deals with them is the key.  Acceptance is not the same as “giving in.”  It just is what it is.

Dating With a Disability, Part 5 of 5

Three months later, Mike called me.  It was very late and I was very shocked to hear his voice.  I could not believe it was him.  It brought back a familiar flood of memories and my heart physically hurt, but I quickly remembered the dreadful reality that he was married.  He asked, “How are you?”  I replied, “I’m awful but why do you want to know?”  He said, “I just had to know if you were mad at me.”  I was surprised and thought his question was quite odd but I answered, “I am not mad if you are truly in love with someone else.  I am angry beyond description though because I just don’t believe you are.  I still have no idea what happened with us.”  He did not respond.  Then I asked, “It’s 1:30 in the morning.  Why aren’t you home with your new bride?  Does she know you are calling me?”  He said he was still at work and no, his wife did not know he was calling.  I told him that he should go home and not call me again.

I received another unexpected call from Mike 15 months later.  He called on a particularly bad day when I had gone home sick (depressed) from work.  I simply could not get him off my mind and just wanted to crawl in my bed.  Within minutes of getting home, the phone rang.  For a moment, I considered not answering it because, after all, no one knew I was home.  But I did answer it and it was Mike.  He said he could not stop thinking about me and asked if he could come down right then to see me.  Competing thoughts collided in my head - this would technically be an affair, yet I knew also that I had to see him if I were to have any hope at all of getting over him.  I needed to know if my feelings were the same as they were almost 2 years ago or did they just exist in my head?  I had to know the answers, so I said yes.

Within 2 hours, Mike was at the door.  Within seconds, it was very clear that absolutely nothing had changed.  For both of us, it was as if we had never been apart.  I wondered if my torment over this guy would ever end.  When he left, I carefully emphasized that I would not be his mistress and that I would not see him again without divorce papers in one hand and a wedding ring in the other.

A year and a half later, Mike was divorced.  Our relationship continued where it left off.  He quit his job as a building engineer and moved from Los Angeles to San Diego into my condo with me.  Soon after, I received my engagement ring.  The words I waited so long to hear finally came, “Will you marry me?”

Mike and I got married in Las Vegas on October 2, one month after he proposed.  At this point, we had known each other for 11 years.  We had met each other’s families.  We were very confident that this was right.  His family from California, mine from Nebraska, and several close friends were in attendance.  We had a sensational day, ceremony, and a reception at the Steak House at Circus Circus.  I was definitely queen for a day.  One month later, we had a reception at our neighborhood clubhouse with family and friends.

Mike’s family and I bonded quite quickly, just like I knew we would.  Their initial reaction was really not that much different than any other family facing the same circumstances. 

In retrospect, every experience Mike and I went through, including his marriage and divorce, was necessary in order for us to realize that we just had to follow our hearts.  We balance each other like no one else can – it simply took time to learn that we don’t have to explain anything to anyone. 

As if on cue, soon after our marriage, “Dear Abby,” the newspaper advice columnist, answered a letter from a concerned reader on the subject of falling in love with an amputee.

“DEAR ABBY:  “.... my daughter has fallen in love with an amputee.  We are heartsick.  She is a beautiful girl and could easily get a whole man.  How do parents adjust to knowing their daughter will spend the rest of her life caring for an invalid?

DEAR PARENTS:  What makes you think he is an invalid?  You would be amazed how well some people can manage on artificial limbs.  There is no reason to be heartbroken.  If he is “whole” enough for her, it says a great deal for her values.  Theirs could be a completely beautiful and fulfilling marriage.”

Mike and I recently celebrated our 26th wedding anniversary.  Finding the exact right person is indeed possible, no matter what the disability, and no matter who understands it.  Sometimes it really is simply just “meant to be.”

Dating With a Disability, Part 4 of 5

Though the issue of what others thought remained unresolved, Mike and I could not be separated very long.  We got back together and continued to see each other without announcing it to anyone.  We always had a great time.  We talked on the phone almost nightly.  However, if the subject of marriage came up, he persisted with his mantra that we would never get married.  He finally asked what it would take to convince me of this.  Very flippantly, I said, “You will either have to marry someone else or die.”  I was becoming quite impatient with his logic now.  Decision time was here for him.

Incredibly, Mike’s decision was to marry another woman he had known for exactly 3 months.   He drove down from Los Angeles to tell me.  This was one of the most difficult nights of my life.  Later I learned it was very difficult for him as well.

He reasoned that this was the only solution, the only way for me to move forward and forget about ‘us.’  On some level that was true – in my heart I knew our love was strong and that he truly believed this was the only way for us to move on.  However, I wanted some answers.  I was very angry and hurt and did not understand.  I asked many questions in rapid succession, giving him little time to answer.  “Why was this happening?  Do you love her?  How can you possibly know you want to marry her in such a short time?  I thought you were never getting married!”  Everything he said sounded so trite and he knew it.  Finally, I blurted out the hard question because I needed the answer.  “Is this person easier for your parents to look at or accept into the family?”  With his head hung, he hesitated briefly before saying, “Yes.”  At least he was honest.  I told him that was ludicrous and that he was making a huge mistake.  On some level, he knew that too.  Within the hour, he was on his way back to Los Angeles.

My world shattered.  Everything I thought I knew was compromised.  How could I have been so wrong?  How could have I been so ignorant to think it was at all possible for me to find a husband?  What else had I been ignorant in thinking?  Devastation overwhelmed me.

Five weeks later, on New Year’s Eve, Mike got married.  Several compassionate friends came over and sat with me on this tumultuous day.  Once the tears started, they would not stop.  I cried until I absolutely could cry no more.  My friends joined my pity party, listened all day to my epiphany about the unfairness of the world, how stupid I had been, why me, poor me, etc.  Every few minutes, I would place myself in Mike’s world and wonder what he was doing.  My heart ached like it never had before.

Needless to say, my outlook on life took an abrupt downward turn.  I no longer believed that my attempts to be “normal” mattered in the slightest or were worth any effort.  After all, my missing limbs had already cost me a well-deserved promotion and the only man I ever loved.  I could not muster any more fortitude, strength or determination to cope with ordinary daily struggles.   My positive attitude had been gravely wounded.  Pessimism was consuming me.

I thought about Mike every day, constantly.  One day, I became obsessed with depressive thoughts during my drive down the Pacific coast.  I envisioned driving into the ocean.  I wondered if my van would get stuck in the sand.  I wondered how long it would take for my van to sink.  Was this suicidal ideation?  I didn’t care.  Still a faint voice in my head kept nagging at me, “If you change your mind, how will you get back to shore?”

So…just in case this dilemma presented itself again, I signed up for swimming lessons at the YMCA.  I was so very deathly afraid of water so I reasoned that for at least 1 hour a week, my focus would go from ruminating about Mike to making sure I didn’t drown.  It worked!  I learned how to swim.  The deep end, the shallow end – it didn’t matter.  I could not reach the bottom of the pool at any depth.  I was sure I would never float, but I was wrong.  It took a while to turn from front to back and then back to front but eventually I got the hang of it.  Swimming with one arm propelled me in a circle and it took some time to use force that matched the shorter arm so that I would go forward.

I began to look forward to my swimming lesson and the 1-hour break from the Mike heartache each week.  Unfortunately, there were still many hours in the day.

Dating With a Disability, Part 3 of 5

Our relationship had gone to the next level – Mike invited me to meet his parents.  One Sunday afternoon, we joined his family for a picnic in the park.  In attendance were his father, mother, brother, 3 sisters, a brother-in-law and 7-year-old nephew.  Although everyone appeared friendly, I felt instant discomfort and intense scrutiny.  Afterward, I learned that his parents would not and could not tolerate me as their son’s girlfriend.  Once out of my presence, they voiced their anxiety, questioned his judgment, and “forbid” him to see me again.     

This was extremely difficult on Mike.  We had already processed together that there might be complications of us dating but he was not prepared for their extreme negative reaction.  He also held a high-level position as the building engineer in charge of many departments in the construction of high-rise office buildings.  He became apprehensive that his employer would have the same reaction and question his ability to make good judgments.  Ultimately though he worried about the toll these reactions it would have on me. 

I could tell Mike was struggling.  He was not prepared for his parents’ reaction, and it hurt him deeply.   I explained that their reaction was not all that unusual really.  I told him that I was confident his parents would accept and like me once they got to know me.  As far as I was concerned, his job would pose no issue at all.  Despite my efforts, however, Mike was not convinced.  He began to withdraw.  Our dates went to every other weekend and even longer. 

Shortly afterward, Mike announced to me that he intended to never marry even though that subject had not yet come up between us.  His focus had clearly shifted to protecting me from the prejudice he blamed himself for causing.  The option to date around was proposed.  He theorized that since I had limited experience in the dating field, I was rather unqualified to really know who or what I was looking for in a life partner.  He was quite creative in his efforts to convince me that he had lost interest in us.  I did not believe him – not for a minute. 

Despite his proclamation that he would never marry, Mike and I continued to see each other off and on for several more years.  He no longer spoke of me to his parents, and they seemed satisfied that we had broken up.  Unfortunately, however, Mike had also convinced himself that marrying me was not an option and he often reminded me to date other people.  I saw no logic in this – his actions and his words were so different. 

Still, Mike thought it best that we break up so I could move on and forget about him.  So we did.  I was miserable.  Mike was miserable too but he honestly believed that this was the best thing for both of us.  I understood all too well that he alone had to come to terms with the reactions that his family and others would have about us.  I also knew we were hopelessly in love so I tried to remain optimistic that we would be together again. 

During this particularly painful breakup, Mike’s mom called me out of the blue.  It had been many years since I saw her in the park.  The call frightened me.  She quickly got to the point and very deliberately asked if I knew what was wrong with Mike.  She wondered if I knew why he had become so withdrawn and depressed and never visited his family anymore.  My heart ached when I heard this.  “Yes, I know the answer,” I told her.  Trying to hold back tears, I said, “Mike is withdrawn and depressed because we broke up.  He believes this is necessary because of negative reactions to our relationship.”  Very matter-of-factly, his mom replied, “Yes.  It is for the best.  We can all accept you as Mike’s friend but we cannot accept you as Mike’s wife.”  It was as if she didn’t even hear me.  I spoke a little louder as I said, “If Mike and I are meant to be together, it will happen no matter who thinks what.” 

During the time we were apart, I took the opportunity to date around as Mike had insisted.  It was the early 1980s and I joined the free-loving crowd and became a bit “adventurous” in the dating world but nothing came of any of these one-night stands.  After all, I had no intention of dating other men.  I did not want to date around.   I would never understand how this sexual freedom could be helpful to my relationship with Mike.  I did not desire anyone else.  I told myself over and over that I had to be patient until he came to terms with the fact that he wanted me.

Dating With a Disability, Part 2 of 5

Mike arrived as promised.  He drove a silver Datsun 240-Z.  Impressive.  He shared with me the pictures he had taken at our dinner dance.  He did great photography work, and I learned that he had a dark room in his home.  I learned that he was a stationary engineer and head project manager for the construction of high-rise office buildings in Los Angeles and San Francisco.  He seemed very intelligent.  I was riveted to the descriptions of his work responsibilities and I was very impressed at his knowledge.  It seemed like he could fix anything – plumbing, mechanical, electrical, construction – everything.  Playfully, I asked him if he could fix my wheelchair if it broke.  He quickly said yes – he never hesitated or even asked if what broke.  I loved everything I was learning about him.  As an added bonus, my cat seemed to like him and she was very discriminating!

Mike was absolutely wonderful, very attentive, genuine, romantic, and, best of all, interested in me.  I felt like a woman for the very first time in my life.  To him, I was Monica the young woman, not a disabled person who needed assistance.  He held doors open because he was a gentleman, not because he thought I could not open a door.  What a refreshing experience.  Amazingly, there was no awkward erroneous first impression to squirm through.  In Mike’s company, I didn’t have to prove anything or be the best at something.  There were no stares, glares, or pity in his eyes.  He didn’t need or want accolades for taking an amputee on a date.  I felt elevated to a place higher than I had ever been before.  I liked it.

We had a wonderful evening.  I hated to see him go.  Before Mike got into his car for the long drive back to Los Angeles, he bent down quickly and kissed me.  I was in a fog as I watched him get into his car.  I heard him say that he would like to see me again if it was okay.  I wanted to scream from the mountaintop that it was okay and tear down my walls but I held back.  I was sure the other shoe would fall.  He was simply too good to be true.

Mike and I saw each other every weekend for almost a year.  He drove to San Diego or I drove to Los Angeles.  We had some incredible dates and learned that we were very compatible with similar philosophies, beliefs and goals.  We visited almost every local tourist attraction such as Disneyland, Seaworld, Balboa Park, Knotts Berry Farm, San Diego Zoo, etc.  We walked many times on the Santa Monica Pier and the Oceanside Pier just listening to the ocean.  We took a one-week vacation to Yosemite National Park.  The weekends were always too short.  Once in a while I dared to wish he did not have to leave. 

After a time, the question of sexual intimacy came up.  Oh my goodness – he was knocking on every wall I had so carefully and deliberately crafted.  There was no way I could imagine being naked in front of him.  After continued rejections, Mike gently suggested that I let him know when I was ready.  My initial thought was, “Ready?  Are you serious?  I will never be ready.”  Public reactions to my appearance with clothes was tough enough. 

In addition, I was beginning to have some nagging questions, “Why would a seemingly normal guy with a great job, a great car, and a home of his own be interested in me?  Why would he, or anyone for that matter, intentionally choose a person with 3 missing limbs?  It was quite obvious he could date anyone he wanted.  What was I missing?  What was he hiding?”  I needed answers.

I told my family all about Mike and how I felt about him.  They were cautiously happy for me but echoed many of my own concerns.  Even Grandma said initially, “Be careful.” 

No matter how hard I waited to see a different side of Mike, however, I never saw one.  I continued to ask him, “Why me?”  He replied that he honestly didn’t understand it either.  He never planned to date a triple amputee but he had never met anyone like me.  He said he had no real explanation except that I was kind, intelligent, funny, generous, thoughtful, compassionate, trustworthy, honest, and… beautiful.  Beautiful.  No one ever called me that before.  However, I was still not convinced that positive character traits compensated in any way for 3 missing limbs.  I continued to ask the “why me” questions over and over and over again.  He always simply said that he enjoyed my company, I made him feel loved, and he had no further explanation.  His actions alone were starting to convince me that maybe we were falling in love.  Ironically, although I didn’t know it then, he was thinking I was too good to be true and he wondered why I would want him.  It was obvious, however, that we were getting in deeper and deeper.  

The moment I thought would never come finally did.  I was ready for intimacy.  My first time making love was magical and mesmerizing.  I was now totally convinced that this relationship was for the long term.  This guy was genuine.  He had finally convinced me that I was attractive, desirable, and beautiful.  My confidence skyrocketed.  I was falling fast and deeply in love.  Mike was too.  However, the road to our ultimate happiness was about to become rather bumpy.