Blind, Deaf, Dunham

Recently the activity center for people with disabilities I attend weekly had an outing to a local theater. One of the center’s volunteers invited us to a comedy she was in. The performance was not a play but a bunch of comedy skits they had put together.

We were transported by our usual taxi service that brings us to the activity center. My van was one of the first to arrive so I was able to choose where I positioned my wheelchair as the seats in the theater were chairs that could be moved as needed. Naturally I chose what I thought was the front row and held the spot to the right of me for my friend.

A blind woman I knew sat in the chair to the left of me. My friend soon came thereafter and there was very little room for anyone else near us. Just when we were settled in two things happened: First the theater crew asked us to move forward so there would be an aisle behind us for the performers to walk through during the show. Second, while we were doing this, the sister of the blind woman who uses a manual wheelchair and is also blind, asked to be seated next to her sister. As we were repositioning ourselves an employee of the center squeezed the wheelchair of the woman next to her sister. As a result, there was no longer room for both me and my friend. One of us now had to sit elsewhere.

I completely understood that the two sisters wanted to sit next to each other but was at a loss as to why two blind people had to sit in the first row. They couldn’t see what was taking place on stage but certainly didn’t have trouble hearing. Did their inability of not seeing give them the need to sit in the first row because they now had to rely more on their sense of hearing? Compensation of senses is something common so when sight is gone - hearing and smelling becomes much stronger.

This brought to mind a quote of one of my son’s favorite performers - ventriloquist Jeff Dunham, “You don’t take the blind to see David Copperfield.” His comedy sketch with his puppet Peanut brings up some serious things to consider.

When blind people go to the theater or more commonly, the movies, they need someone to sit next to them and explain what is being performed. Of course talking during a performance is prohibited and therefore cannot take place. This got me wondering why there can’t there be a special area for people who are blind or have poor eyesight. Given the century we are in and the technology available is there no way to construct something so whispering in the last row would not be a disruption?

Jeff and Peanut also tell the story about a group of deaf people who came to see their show. “Everyone was facing us but there was one guy who was facing the other way waving his hands moving his fingers. He was a signer!! Think about this for a second - they brought a bunch of deaf people to see a ventriloquist!”

Deafness is the easier disability to compensate for in theaters because signing makes no sound. Why then isn’t there a system where when purchasing tickets, someone with a hearing disability can request a signer be present. Is it really too distracting to have a person stand at the corner of the stage or has no one ever seriously considered the needs of the deaf?

The mass media doesn’t even have a way for those who can’t hear to watch television or enjoy going to the movies. Does it really too costly to have a signer appear in the corner of the screen? Since not everyone who has trouble hearing knows sign or can read lips, another solution is to provide subtitles. If subtitles can be used on DVDs for those who don’t understand the language then why can’t they appear at the bottom of our televisions?

All this would be the norm in a perfect world - a world in which those with sight and hearing disabilities are taken into consideration and not just given a ticket discount.

Me In A Nutshell

Now that I’m blogging, I thought you all should know who the blogger is. This is me in a nutshell:

On July 20, 1964, in the middle of a very hot summer, I came into this world kicking and screaming. This might sound like the average birth to you but it was not. After nine months of a healthy pregnancy, I was born anything but healthy. My umbilical cord was wrapped three times around my neck and it was getting harder and harder to breathe. After unraveling me, I was placed in an incubator and a priest gave me my last rights. Little did everyone know then that I was to defy everyone and every negative thought they had.

Five days after delivery my mom was released while I was still under observation. As the doctors and nurses watched me, they called me a “fighter“ but didn’t know there was something just not quite with this newborn. Two weeks after my birth, I was released to my proud parents and thirteen-year old sister Ursula. The first big event in my life – my baptism was different. I was the only baby who could not have the oil or water.

At four months, I was having great difficulty sitting up and keeping my head upright. To my mom this didn’t seem right. She had my sister to compare me to and I was in no way like her. My parents talked to people they knew concerning a baby’s development stages. They told her to wait two or three more months before consulting a doctor - development takes time and every baby is different.

Three months came and went. I was now seven months, but there was still no change. My mom was sure something definitely was wrong, but my dad could and would not accept this. To him his little girl was perfect. Even the pediatrician saw nothing unusual, excusing my behavior as being a “slow” child needing more time to develop. It was when my mom noticed that I had become cross-eyed and was referred to an optometrist. This doctor confirmed her doubts and referred us to a New York hospital specializing child development. The very next day I was being examined there and diagnosed as having Cerebral Palsy. This medical phrase was completely foreign to my parents. The doctor assured them this condition was not fatal and told them it is a malfunction of a small part of the brain that controls the various muscles in the body. This damage was from the umbilical cord being around my neck. Not enough oxygen entered that part of the brain. The cerebrum area of the brain, which is the center of the thought and intelligence, was undamaged. Under his advisement, I was enrolled in a specialized school where children like myself were receiving the proper care and attention.

I attended the United Cerebral Palsy Center’s infant program in Jamaica, Queens. There I was taught how to properly sit, stand, speak, and the other fundamentals of child development. Through vigorous physical therapy, I learned to coordinate my leg and arm muscles. In the very beginning, I sat in a wheelchair, because I could not maintain my balance at all. As the years went along, I graduated to walkers, canes and crutches.

Although I was getting therapy at the center, this was not enough and therefore I needed to go to the hospital in Manhattan for extensive rehabilitation. Mondays – speech therapy, Wednesdays – physical therapy and Fridays – occupational therapy. This was not only going to be a challenge for me, but for my mom as well. Being an immigrant from Germany, living in a city where everything was within walking distance, she had no driver’s license. Through a friend, she quickly learned and got her license on the second try. This was half the battle; she also needed someone to go into Manhattan with us. I could not sit in a chair let alone in a moving vehicle without my head bouncing all over the place. The same friend volunteered.

Summers meant vacation from school but not from therapy so the center sent a visiting nurse to continue poking, pulling and prodding me. We lived on the second floor of a three-family house. When the downstairs doorbell rang, I’d crawl to the top of the stairs and yell down, “When are you going home?” My mom would remind me she hardly had a chance to come through the door. Nonetheless, I wanted to know!

From age five to eight, I appeared on several United Cerebral Palsy telethons as a representative for my school. On one such occasion, they did a segment on me throwing away my crutches completely. I have been walking without them ever since. This new found independence was a fun time in my life because my dad who held my hand everywhere I went, had to get used to letting me walk to where I was going on my own. I’d get up and he’d be there with his hand out and I’d laugh saying, “I can do it!” From there on I believed I could do anything! I had a setback when I could not walk because of a broken leg. I did this while riding a trike. A friend was helping me ride by standing on the back and pushed. I felt we were going too fast and decided to put my left foot in the front wheel to stop. We did, but boy was I in pain!

I had as many friends as anyone else but the teachers and counselors at the center thought it would be a great help if I were to spend time away from my parents. Not only did I need to learn to become independent, but my parents deserved a break also. I was not looking forward to this summer at all. Along with my best friend, Eva Munson, I went to my first sleep away camp for disabled kids. We were not allowed visitors and I stayed for the six-week program while Eva went home after three. There I learned to dress and feed myself. I hated it! I was so homesick! I begged to go home and although I got letters with gum in them every other day, I was not a happy camper! I spent two summers there before the sponsored organization depleted its operation funds. You should have seen me run down the driveway when my dad came home from work the day camp was over! I ran saying, “Daddy, daddy.”

This was not my first camp experience. I went to a day camp that my father built with Eva’s father. It was funded and ran by United Cerebral Palsy of Queens. You see, while my mom was getting me to therapy, my dad was getting a form of therapy of his own. He just couldn’t talk about what was going on with people so he decided to join the father’s support group at the center. There, they not only talked but were given jobs to get them involved with the center. Fred and my dad started out running bingo night and then constructed a house down the street that would house the camp.

I wound up having a great camping experience in New Jersey. At Camp Oakhurst the personnel taught campers such activities as arts and crafts, drama, music, woodworking and photography. I liked it so much I kept returning for fourteen years. They would have let me continue coming for their adult program, but my parents decided I was too old.

In my first year of junior high school I was one of those well-known, well-liked students. By the end of my second year I was fully mainstreamed. In the school’s mainstreaming program, the disabled pupil is placed into classes having as many as forty “non-handicapped” students for the entire school day. I thought this experience was not only very beneficial to me, but to my teachers and classmates as well. Many of the students had never before come in contact with a disabled person. As a result, they would often ask if I was either drunk or stoned; some would just stare or laugh. Since I was able to laugh at myself, I was able to put them at ease. This worked most of the time and my fellow classmates started to ask questions out of pure curiosity and wondered what it was like to be handicapped in a classroom setting, among other things. I understood their curiosity and tried to answer them as openly and honestly as I could. I actually started to enjoy teaching everyone in school about my disability. Sometimes though, it would get very frustrating because deep down I had the feeling knew that no matter how much or how long I talked to them, they would never fully realize what it is to be looked upon as different.

At age of sixteen I went to Francis Lewis High School. Better known as one of the toughest schools in Queens. Since I don’t have the physical ability to write, my notes were taken for me. A teacher, who taught publishing, didn’t want me taking his class because I couldn’t write. When I sat in the seat in front of his desk and I said, “my disability is physical not mental”, he got the idea I wasn’t leaving and I wanted to be a writer very badly.

In 1987 I graduated college with a BA in English. Unfortunately, there was no work in the field where we were living so I stumbled (excuse the pun) into a job with the Nassau County Police Department. I worked there full-time as an inventory custodian.

For most of my spare time, I was heavily involved in sports; wheelchair handball, track and field, equestrian, and trike: all for competitions. In 1994, I went to international competition for trike and bought home a silver medal.

Like I said, I am a person who defies what people say.

I was told me I would never wear "regular" shoes and be able to walk in them - I do!

I was told I could never drive a car - I did as well as ride a horse!

I was told I would never marry because no one other than my parents would want to care for me - I married in 1999.

I was given a dog from people who said I would never have a child - I have a wonderful son!

Life is good!

Zoomingmamma

Are you not asking yourself what a zoomingmamma is?

The answer is simple – a mother on wheels!
That’s me and this is the story of why I call myself Zoomingmamma.

Having been born with Cerebral Palsy (that’s another blog maybe) I always used wheelchairs, both motorized and manual from time to time. When my son was born, the wheelchair use changed to most of the time because doing things like carrying him from room to room was much easier and safer for us both. Outside I didn’t need a baby carriage. My husband would plop him on my lap and off we went.

Off we went alright, when my son was six weeks old, we travelled from The Netherlands to New York to introduce him to my parents. While we were on the east coast, we decided to travel to my favorite city, Washington, D.C.. The six hour drive took us to an old friend who lived there gave us the grand tour only he knows how to give.

As we headed west there was one more stop I needed to make and will be forever grateful I did! We stopped at the house of Trish Day a woman I met through an internet forum/website. She started the Parents With Disabilities Online Website - http://www.disabledparents.net/It was the resource/information website that answered many of the questions I had during my pregnancy. I was thirty-five, pregnant with my first, had CP and lived in a foreign country. Boy did I have questions. Although feedback came from all members of the website, all my questions were also answered by Trish. We exchanged instant messenger names and phone numbers so we could chat. We really connected and wanted to meet each other so my husband, six-week old son and I had lunch with her and her family at their home in Maryland. It was like reuniting with old friends.

After a wonderful lunch she gave me a book – Mamma Zooms by Jane Cowen Fletcher. Handing it to me she said, “This is nothing really. I have several copies. I give them to disabled mothers as a gift when I meet them. I just love the book because it shows just how many different things a mother in a wheelchair can be.”

She was wrong. That book was anything but nothing! As I turned the pages, tears came to my eyes. Those crisp, colorful pages showed me all the things I could and just maybe would be to my son. The last page was the most impressive – “…Then mama is just mama, and that’s how I like her best.” No words could ever thank Trish enough for giving me that book. No words could ever express what that book meant to me on that day or today.

Today I use that book as a teaching guide at my son’s school. Although my son is now in a higher grade, I volunteer my time once a week in his old third grade class, so that the children come in contact with someone who has a disability. The teacher and I feel that if this interaction is done at an early age, acceptance of people with disabilities will take place while ignorance and fear become less.

So if you see a woman with a child either standing on the back of a motorized wheelchair or sitting on the armrest, think of me – Zoomingmamma!