[Congressional Record Volume 144, Number 86 (Friday, June 26, 1998)]
[Extensions of Remarks]
[Pages E1261-E1262]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        IN HONOR OF EMILY CIKRA

                                 ______
                                 

                        HON. DENNIS J. KUCINICH

                                of ohio

                    in the house of representatives

                        Thursday, June 25, 1998

  Mr. KUCINICH. Mr. Speaker, I rise to salute an extraordinary and 
determined young lady, Emily Cikra. Although diagnosed with muscular 
dystrophy, Emily has boldly accepted the challenge and lives her life 
passionately, serving as a role model to all she meets. She powerfully 
tells her own story in the June 17, 1998 issue of the Plain Dealer:

                       Serving a Special Purpose


  Bay teen with muscular dystrophy opens others' eyes to disabilities

                            (By Emily Cikra)

       When I was in second grade, a little girl came up to me on 
     the playground and wanted to play. When I asked how she knew 
     my name, she replied, ``Everybody knows you, Emily. You're 
     the famous girl in the wheelchair.''
       Some people think I'm special, but I'm not. I'm me.
       I have had a disability my whole life. Neither my parents 
     nor the doctors realized anything was wrong until I was 1, 
     when I wasn't reaching the physical milestones a typical baby 
     would.
       I was diagnosed with muscular dystrophy. This disease 
     weakens the skeletal muscles and restricts me from walking. 
     There are many types of muscular dystrophy; mine, called 
     congenital, is one of the rarer types.
       Early on, my parents tried to include me in everything 
     typical kids were involved in. They always assured me I was 
     the same as everyone else; I just use wheels to get around 
     instead of feet.
       I have always believed this, and have done a lot of things 
     people wouldn't expect me to be able to do. For example, I 
     have skied at Boston Mills Ski Resort, gone to Girl Scout 
     camp, ice skated in my chair, sledded, ridden roller coasters 
     at Walt Disney World and swam in the ocean.
       Kids in my grade and my whole community have always 
     accepted me. They have been able to look past my disability 
     and get to know me. I think it is a good experience for them 
     to grow up with someone with a disability. Hopefully they 
     will be able to see all people as equals and give everyone a 
     fair chance.
       Though it usually doesn't bother me, being in a wheelchair 
     can get me down. There always will be things I can't do. It 
     also makes some things more difficult, such as going into 
     friends' homes, certain stores and restaurants.
       Sometimes my friends make plans for activities that require 
     physical agility, such as dances or sports. Transportation is 
     an issue because someone has to be there who can drive my van 
     with a lift. But as much as possible I participate and my 
     friends are always considerate in thinking of how to include 
     me.
       This summer I would like to find a job, but due to mobility 
     problems and general weakness, waitressing and typical teen 
     jobs are out of the question. I guess I'll have to be a 
     little more creative.
       In the past few years I have realized that God put me here 
     for a special purpose. I believe I am here to teach others 
     that people with a disability are the same as other people, 
     with feelings, opinions and ideas of their own.
       I have begun trying to spread this word by talking at Bay 
     Middle School for a diversity class that is a requirement for 
     all fifth-grade students. People with disabilities and from 
     different cultures talk to the class.
       I tell the kids to ask anything on their minds, and if it's 
     too awkward for me I will just pass. The questions they ask 
     range from simple to very thoughtful. For example, ``How many 
     brothers and sisters do you have?''
       Or ``Do you have any pets?'' to ``Do you sleep in your 
     wheelchair?'' (No!) and ``How do you get dressed in the 
     morning?''
       The kids are almost always more mature about meeting me 
     than some adults are. For some reason, many grown-ups seem to 
     think if you can't walk, you can't hear, see or think. They 
     tend to talk down to me as if I were half my age.
       Last year I had a setback just before Christmas. I 
     developed pneumonia and was in Rainbow Babies & Children's 
     Hospital for six weeks. I had a tracheotomy (a small hole 
     surgically cut in my windpipe) and now I use a portable 
     ventilator to help me breathe.
       Actually I feel a lot better, and I'm working on getting 
     off the vent. Our lives are a little different. I have a 
     nurse or an adult nearby at all times in case of an 
     emergency. I am lucky to have four wonderful home-care nurses 
     who have been very comforting to me.
       It's not always easy, but I have a loving family, 
     supportive friends and a community that rallies for me in a 
     time of need. I'm not special, but I'm surrounded by a lot of 
     people who are.

  My fellow colleagues, join me in recognizing Emily Cikra. She is a 
special person and deserves our Nation's recognition.

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