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.

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 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.