Being Misunderstood

                                                               

Have you ever felt misunderstood, abled-bodied, or not? How frustrating it is when this misunderstanding, due to, a disability occurs. I believe misunderstanding comes from a lack of knowledge and lack of education.

Fact:  80 to 90 % of the causes of cerebral palsy is caused from a lack of oxygen before during or after birth. https://avazapp.com/blog/10-cerebral-palsy-facts-and-myths-you-must-know/  

An example of misconception is a stranger knowing nothing about you nor your disability. When someone has never been educated or does not know what cerebral palsy is, they are simply uninformed. 

The question is how can we with the disability be of help to someone who lacks the understanding?  Are there steps we can take or things we can do to shed light on the subject so to speak? The answer is yes.

In my 47 years of life, I have experienced that for the awkward silence between another person and myself I need to step up to the plate and break the ice so to speak. Some ice breakers are: have you ever met someone with cerebral palsy? Do you know anything about cp? Did you know there are over 17 million people with cerebral palsy? People do not expect this type of interaction and at the same time it gets them thinking.  Even a simple hi can break the ice and remove the elephant in the room. 

Are you, as the individuals with the disability educated enough about your limitations to educate someone else? If you feel that you lack information concerning your disability research it. Not only will you help educate yourself, but you will be able to educate others. I can tell you I did not know what cerebral palsy was until I got in school and was older enough to plainly ask the doctor to explain it in simple English. 

Some topics to talk about with others is simply explain that cerebral palsy is in majority of cases is caused from a lack of oxygen which causes brain damage in different parts of the brain, which caused different parts of the body to be affected in some way. From swallowing, breathing issues, nonverbal, to speech difficulty. Some have limbs effects in some cases one side of the body is affected, other cases all limbs are affected, mobility issues from having a limb to their walk to having to rely on a mobile device such as a walker or a wheelchair. Other issues such as seizures, scoliosis, trouble writing, talking to even not being able to read. As you can see there are a multiple of issues, we can encounter due to motor problems, muscle issues, coordination issues.

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Cerebral-Palsy-Hope-Through-Research

the fact of the matter is not one of us with cerebral palsy are identical. We have similarities but not the same.  The way I educated my children when they were little, yes, I said children. We can have children as I said there are a lot of misconceptions. Anyway, I taught my children and their classmates that I did things differently. I would call myself a backwards mom because I did not do things like other parents, example, I would face my children away from me to zip up their coat, as I was zipping up my own coat because of the limitations I have on my left hand.  A little imagination, through trial and error goes along way. What works for me may not necessarily work for you. Experiment to see what works for you.

The part of being misunderstood is people who are abled-bodied or non-disabled are unfortunately, swift to judge and are at a loss for words, because they have not been taught how to interact with someone with a disability, and a lack of knowledge.

For the readers, reading this who are much younger than me, we with a disability in the days of old as they say, were if given an opportunity people with disabilities were sent to hospitals known as mental institutions.  Disabled children were looked at as being demon possessed or a crazy child.  Well, I want to clarify this, we with a disability are not mad, or crazy, we do not need or deserve to be placed in an institution. We are none of above.  I encourage you to read the history on disability in the following link.

https://www.nps.gov/articles/disabilityhistoryearlytreatment.htm

The truth of the matter is we simply have limitations that are out of our control and we want to be accepted like any other human on the planet.  Our cognition is completely intact as anyone else alive.  Our physical ailments do not make us any fully intact, we are not any less smart than anyone else.  Keep in mind abled-bodied people and those uniformed are simple unaware of these facts.   

I encourage those with a disability such as cerebral palsy to find your voice, speak up and advocate for yourself. If you are unable to for any reason let your support system advocate for you. Those without a disability by just saying, hi, breaks the ice and we only want to be treated as anyone else.       

  I encourage you who are non-disable to open to learning the facts and not be so quick to judge and assume, rather break the ice, and get to know the person before passing assumptions and judgements. It is as simple as having a simple conversation. Happy reading everyone!

Author: My cerebral palsy life

I became a writer in 2010, then I pursued an education in health care administration. Working to get a medical coding certificate to add to my professional titles. I and my husband have 2 adult children, 2 dogs. I was a single mother of two for 18 years. I have personal experience in health care as a cna, mental health and raising children with developmental disabilities. I am an advocate for the disabled as I was born with cerebral palsy and have learned to overcome challenges in life. My motto is life lessons are to be teachable, to educate, share our skills and learn to understand others that we encounter on life's journey.

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