December 12, 2017

    I Felt Excluded!

    Lisa Cooley, 49 years old

    At the age of 2 years, Lisa was diagnosed with cerebral palsy when her parents noticed she was not as flexible as other children.

    Lisa did not realize she had cerebral palsy until later.  “I was 10 or 11 years old and I was left out of the school’s square dancing event. I did not understand why I was being excluded. Up to that point I was just me who needed to use a walker.  Even today, as an adult I still ask myself why am I being left out and excluded,” wondered Lisa.

    As a child, Lisa used a walker to get around, but needed to use a wheelchair as a teen. Her teenage years were the most difficult because she couldn’t attend events. Lisa felt left out because venues weren’t wheelchair accessible. She wanted to attend a concert at the Memorial Auditorium (Today, it is fully ADA compliant), but it wasn’t wheelchair accessible at the time. Lisa didn’t feel that this was fair or right.  

    Today, places are more accessible and Lisa’s barriers have shifted from physical barriers to attitude barriers of others. There is a widely accepted myth that people with disabilities that they “can’t think for themselves.” Often, the public’s perception of a cerebral palsy diagnosis is one diagnosis fits all – unvarying in symptoms; the public believes everyone with cerebral palsy cannot walk or talk. This is far from the truth; “One diagnosis does not fit all,” says Lisa.

    Cerebral palsy is a broad term that refers to a group of disorders that affect a person’s ability to move. This is a permanent lifelong condition and is typically associated with damage to the brain either during pregnancy or shortly after birth.

    Movement issues are not due to damaged muscles or nerves, but instead caused by problems in the brain. In many cases, someone’s physical appearance of distorted limbs causes the public to believe that s/he has low mental abilities.  This is not true. Usually a person with cerebral palsy has the same mental acuity as the general population.

    The effect on physical appearance does not always affect the mind’s ability to think. Most often a person with cerebral palsy is fully intact and capable of thinking and learning, just like everyone else.

    Lisa defines cerebral palsy as a miscommunication between the brain and the spinal cord. “My mind thinks of lots of things that I can do, but my body doesn’t always want to do what my mind is telling it to do,” said Lisa.

    Despite her diagnosis, Lisa is motivated to work hard each day to be independent and interdependent. Interdependence is knowing when to ask for help. Lisa knows that she can handle most things herself, but isn’t afraid to ask for help when necessary.

    Lisa has figured out how to overcome her diagnosis and what she can’t figure out, she moves on. This is the only way she knows how to live and be. Lisa learned, from her parents, to never give up.

    Lisa’s advice to parents of children with cerebral palsy is recognizing that parents have an important role – fight for your child! Don’t deny that your child has a disability. Don’t immediately accept that your child will never walk or talk. Also, be extremely supportive and give your child space, when needed.

    If given the opportunity and support, people with cerebral palsy can accomplish wonderful things. Without opportunity and support, they are forgotten and ignored; they feel like people don’t care enough to fight for them. “Fighting for them” does not need to be complicated; it can be as simple as making someone feel included.

    Lisa wants the world to not “put people in a box when you find out they have a disability” such as they can’t think for themselves or always need help moving around. Also, to realize that the diagnosis of cerebral palsy does not affect everyone in the same way.

    Lisa’s passion for advocating for others started when she was 27 years, she was having trouble with her transit provider. She needed to be picked up at her door, but her transit provider insisted she could walk to the bus stop which was too far for her to walk.

    She also grew up in a family that volunteered. Her grandfather and grandmother did a lot of volunteering in their community of Quincy, Illinois at their local day care center and YWCA. They were kind and caring people.

    “Some people think I’m superhuman because of the school or community work I’ve done, but I am just ordinary,” said Lisa.

    In each council, Lisa has advocated for everyone with cerebral palsy to be included everywhere and change the public’s perception. She is fighting for a better future for herself and others – breaking down the walls of isolation!

    Advocacy is important because it gives people with disabilities a voice-we need to be heard for what we want and need. Lisa defines advocacy as not speaking for others, but getting their voice heard and sharing their point of view. She believes this is especially important for children who are often told what they need, forgotten, ignored, or left out.

    For the people with cerebral palsy, Lisa encourages them to never give up on themselves. At times, Lisa felt sorry for herself especially as a teenager. Most children experience bullying and that is not okay. Bullying is a profound problem. Always tell someone if you are being bullied.

    Lisa regrets not listening to her mom about exercising and stretching more when she was younger. Without regular stretching, tendons tend to stiffen up for individuals with cerebral palsy. 

    Albeit, Lisa has only known her life with cerebral palsy and wouldn’t swap places with someone else. There is nothing that Lisa would change about her life and she has overcome a lot in her life. Sometimes, she wishes she had a different life, but those days are few. Lisa has wished for a cure, but so far that has not happened.

    Lisa serves on numerous councils:

    • California State Council on Developmental Disabilities
      • Also member on their Regional Advisory Committee
      • Appointed by two governors: Arnold Schwarzenegger and Jerry Brown
    • Alta California Regional Center
      • Board Member 2001-2002 and 2002-2003
      • Client Advisory Council Member 2001 to present
      • Self-Determination Committee Chair
    • UC Davis Medical Center
      • Center for Excellence on Developmental Disabilities
        • Member May 2007 to present
      • UC Davis MIND Institute
        • Toastmasters group for people with developmental disabilities 
        • Leadership Education in Neuro-Developmental Disabilities
          • Training January – August 2007
    • UCP of Sacramento and Northern California
      • Program Committee Member

     

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