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 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.

Dating With a Disability, Part 1 of 5

As a triple amputee, dating can be tough.  I am a triple amputee, and this is my true dating story. 

I went through high school and college without a true “date.”  While I wanted to date, I could understand why it did not happen.  I had come to believe that the chances of finding a life partner were extremely slim. 

I was 24 years old when I met Mike.  He lived in Los Angeles; I lived in San Diego.  We met at a dinner dance for the club I belonged to called Amputees in Motion (AIM).   He was a driver and had picked up several people who could not drive themselves.  I saw him across the room.  He stood out because he was so tall (6 feet 4 inches I learned later) with gorgeous red hair.  He had not seen me yet.

For me, it was love at first sight but I quickly pushed it out of my consciousness.  By this time, I had become quite sinister to the idea of ever meeting a man, let alone the man of my dreams.  I was convinced that my physical state was too great to go unnoticed.  At this point, I had no more illusions that my disability was simply an incidental detail.  Rather, it was actually a heavy burden that I often wondered if I could continue to carry.  After all, it had already altered my choice of career, prevented a promotion for which I was qualified, and at 24 I had still not had a real date.  It was very difficult to stay optimistic.

To my surprise, the tall red-head asked if he could join our table of 5.  He was solo and reasoned that we needed 1 to fill our table of 6.  I couldn’t believe my luck.  There he was at our table.  The dinner was great, and the conversation was lively.  We learned that his name was Mike, he was a building engineer, and he lived in Los Angeles.  He was also a photographer and took pictures of the AIM events throughout the year.  I wondered if he had an amputation since this was, after all, an amputee club, but he said simply that he was a volunteer driver for those who needed a ride.  I could tell right away that he was fun to be around.

As we moved to the dance room, he came with us.  Good grief, I was exploding with joy.  The tables at the dance floor were very small and could sit only 2 people.  Soon Mike was sitting with me – just us – alone!  I was reluctant to like him so I doubly reinforced the defensive walls around me, insulating me from getting too close and being heartbroken.  I told him that he did not have to humor me by sitting with me, that he should go dance.  He replied calmly, “I don’t like to dance.”  I told him that I didn’t want him doing something different just because I could not dance.  He told me he did not like to dance, that he was just the driver and photographer.  With that out of the way, we went on to have a great time.  The dance went on around us. 

When the time came for him to leave, he asked if he could see me again.  I was speechless initially but I said sure, even though I truly expected to never see him again.  I knew I really liked him but some painful encounters with reality were still fresh.  Getting my hopes up was not an option.  However, as my friends and I returned to San Diego, I thought about the night and the good time I had.  Apparently, I was uncharacteristically quiet, and the women I rode with confessed that they too thought there was something in the air between Mike and me.  I told them I didn’t think so but deep inside I hoped they were right.

Mike did call about 2 weeks later and asked if he could come to San Diego and take me to dinner.  I was quite surprised and very excited.  He said it would take about 2 hours to get to my house.  I had just enough time to shower and dress for my first real date.  I was 24.

Naive Stereotyping

I was born in 1954 in Kansas (moving to Nebraska shortly thereafter) – in a time and place where mentally and physically disabled people were often placed in a “home,” a facility created for such a purpose.  The severity of the disability also played in the decision.  Apparently, it was felt that these facilities could/would provide the specialized care and equipment that would be needed – care and equipment not readily known or easily provided by the average parent. 

My physical disability was quite obvious at birth.  I had no legs and only one arm.  The doctors didn’t even think I would live (interesting that a missing limb or limbs were a threat to life).  Looking for answers, my parents were advised by the doctors that placement in such a “home” was their recommendation so my father embarked on a journey to find one that would best serve my needs.

The search took him as far away as Boston and many places in between.  I sometimes wonder what my life would have been like had I been placed in one of these homes.  Would have I ever known my parents and eventual 6 siblings?  Would have I graduated from college?  Would have I been employed?  Would have I learned to be independent?  Fortunately, my parents took me home, opting to learn on the fly how to raise a disabled child.

My book, My Extraordinary Life describes my journey.  Despite having only one limb, my life was quite “ordinary.”  From a very young age (crawling), I was expected to do what “normal” kids did.  I was given no special allowances or excuses.  My Dad told everyone in the family, and eventually me, that I needed to try things first, and if I could not do them, I could ask for help.  That turned out to be a brilliant philosophy because I learned to live my life without expecting any concessions.  I believed I could do anything, and I found a way without even knowing I was looking for a way.  I was in college before it occurred to me that others were seeing my life as far from “ordinary.” 

I grew up, graduated from high school and college, learned to drive a car, moved from Nebraska to California, got an apartment, got a medical transcription job, learned to swim, lived alone for many years and then got married – certainly an ordinary life.  My book details the joys and struggles of these events.  It wasn’t always easy.  I would eventually come to realize as well that despite these ordinary accomplishments, the world would always see my disability first.  Predictable, but entirely inaccurate, assumptions about me and my life would persist.  The realization that these assumptions would continue despite my “ordinary” life was a painful one. 

In my book, I provide some thoughts and advice for those who are disabled, those who care for the disabled, families of the disabled, and those who are not disabled.  I provide some valuable tips for children when they see a disabled person for the first time.

I am extremely grateful that I did not end up in a “home” because my life would have been very, very different.  I am indebted to a family who unwittingly executed an exemplary approach to raising a disabled child.  Because of my disability, and perhaps in spite of it, I have learned more than the ordinary patience, empathy, tolerance, and priorities.  It is my hope that much can be realized about disabled people after reading my book.

One should never stereotype because the label or assumption is very likely to be very wrong.  Given the opportunity to be “ordinary,” the disabled can, and often do, reach surprising heights, and they don’t see anything extraordinary about it.  Some roads are winding and some are straight, but both roads can be traveled.  When meeting a disabled person, always remember to think before you stereotype.