I was interviewed today for a young lady’s research paper. Thought I’d share with you my responses; knowledge is power.
[Mr. Webb sic] When I looked at your profile on www.thecpgroup.org I was unsure of your connection to cerebral palsy. Do you have CP or do you work with individuals that have CP? In any case, I compiled a couple lists of questions so you can answer those which are appropriate:
I have cerebral palsy and I work with folks with a wide spectrum of disabilities, including CP. My CP is mild compared to most, I walk with two canes for balance and have limited range of motion in my hips, legs, and feet. My speech, vision, and hearing is not effected. My cognitive ability, although some may beg to differ, is unaffected.
LIST A: What are your views on modifications or accommodations for persons with communication disability compared to those without disability?
No real views, folks with communication challenges in my eyes are no different than non-disabled people. Just takes them longer to “speak”, but no different that someone with reading glasses taking a bit longer to read.
Are there specific terms to refer to the person with CP that are preferred and politically correct?
Use person first language and don’t use the diagnosis unless you really need too. In other words, if using the diagnosis say… ” Please go work with Tom who has Cerebral Palsy.” NOT “Please go work with the Cerebral Palsy guy name, Tom”.
What was your first contact with this communication disability before your became a professional?
Cerebral Palsy isn’t a communication disability. However, depending on the severity of CP, a person may have a speech or language impairment. My first exposure to a person with CP with a communication impairment was when I was three years old.
What aspects of your work related to the communication disability have been the most challenging or most rewarding?
Most rewarding aspect of working with individuals with communications disabilities is watching them use new technology that allows them to communicate better. The most challenging aspect is finding the funding and resources to purchase the communications technology for those in need.
How do you think the media portrays people with CP? How do you think it will change in the future? Do you think there should be more protrayals of CP in the media? Do you think that would help raise awareness?
The media is getting better. There aren’t a whole lot of folks with CP in the acting field. In the future you’ll see less folks with CP thanks to effective treatments and technology… many will blend in with the rest of “us”.
How important do you think it is to incorporate significant others in the medical process?
“Significant others” as in boyfriend/girlfriend/parent/advocate? I think its essential to have folks support those individuals with CP. It aides in the development of informed consent and better patient awareness. No one enjoys making life altering decisions without someone to discuss it with or share experiences.
What special preparation or research is needed to provide intervention for people with a disability?
More research in the treatment and diagnosis of individuals with CP from birth to 12 months is needed. How to managing the aging CP population is also a understudied issue.
How difficult is it to work on a multidisciplinary team? What are the advantages or disadvantages?
Sometimes certain team members have their own agenda(s) and don’t have the interest of the client in mind. However, most of the time the team is the best approach as all area of the person’s areas are addressed in detail.
How have your views regarding this disability changed throughout the years?
Obviously, over the years I’ve become more comfortable of my own disability and of others. My views of disability are that I have no defined view. I don’t see disability in a person, I usually just see ability or what can a person do. We all are different, if we weren’t the world we be a very boring place.
What are the hot topics for research related to CP?
The delivery of medicine thru spinal fluid pumps and new “suit” therapies for younger kids with CP. Also the treatment and care for those aging with CP is a hot topic.
LIST B: How would you describe your disability to others?
My CP is mild compared to most, I walk with two canes for balance and have limited range of motion in my hips, legs, arms and feet. My speech, vision, and hearing is not effected.
What do you think was the cause of your disability?
Lack of oxygen during birth, i.e. too much anesthesia
When was the onset of the disability? (i.e. Was this something you were born with or was this something that came about later in life?)
Born with CP, realized at around 11 months as I wasn’t sitting up straight and yet I crawled everywhere.
What kind (if any) of therapy have you received? Have you continued the therapy?
Spent from age 4 to age 5 at John Hopkins having operations to correct my legs and tons of PT. No, I haven’t continued therapy. Stairmaster 20 minutes a day, that’s it.
Did you find therapy/remediation helpful? Was there anything that frustrated you about the process?
Yes, very helpful at the time. Wouldn’t have the ROM I have today without it.
What are your feelings toward the health care system and their treatment of your condition?
I was fortunate that I had great parents that got me the best doctors and therapist. Those that are disadvantaged aren’t as lucky as me and often the system fails them.
Has your disability had an effect on the daily routine of your life? If so, what changes have you noticed?
No, my daily routine really hasn’t changed since I’ve had CP all my life. I still get up each morning and eat breakfast, get my shower, get dressed, have my Flintstone vitamin and then watch cartoons.
Can you remember a time when people treated you differently or in an inappropriate manner due to your disability? What did you find wrong with their actions?
It happens on occasion and I usually attribute it to them just being a human. We all aren’t exposed to every type of person or disability “out there” throughout our lives. Life is too short to find fault in their actions, the best thing I can do is try to befriend and educate them if the opportunity presents itself. Its when they don’t wish to learn from their experiences that I sometimes get frustrated with them and don’t bother wasting my efforts.
What do you want people to know about your disability? Can you name some things that people may be unaware of and need to be more sensitive to?
If the person is curious, I’d share with them that CP is not something genetic/hereditary. It’s not something that you can catch like a “cold” and please don’t tell your children not to stare at me in public. Its only natural for children to stare at something different, its when you discipline them for staring that a stigma becomes attached. Individuals with CP, or any other disability for that matter, are sexual beings too. I have experienced more than 99% of what the able-bodied population has and I’ve done so with a smile. That is the core of what I’d tell people.
Have you ever seen your disability portrayed in the media? How do you think it was presented? Do think there should be more portrayals of CP in the media? Do you think that would help raise awareness?
Yes, I have seen my disability portrayed in the media. I think it was presented well. I especially enjoyed watching “Handi-man” on “In Living Color.” Rising awareness… whether positive or negative, is ultimately good.
Any other information or stories you would like to share 🙂
Some folks have asked if I had the opportunity to take a magic pill to fix my disability would I? Or if I could be born again without a disability would I? My answer is an absolute “NO”. I would not be the person I am today, as I have clearly been shaped by my disability. I have the fortunate pleasure of walking both sides of the fence everyday… in one way I see the able bodied point of view, while in another way I see the perspective of those with disabilities. This creates an appreciation, although a twisted sarcastic view of life.
Thanks again for taking the time and consideration to do this. I can’t tell you how much I appreciate it. If you have any questions please feel free to email me back or call me at 224-***-**** (c). Hope all is well, enjoy your day!
Sincerely, Sonia P**** ****@uiuc.edu