Friday, March 24, 2017

CP Awareness Month 2017: Myths and Facts About Cerebral Palsy

It's Cerebral Palsy Awareness Month! In case you're new here, I have CP!  See, now you're aware!

While I have mixed feelings about the concept of awareness (see my latest blog post for Rooted in Rights), I thought it might be useful to compile some myths and facts about CP.  Let me know in the comments if there's any I missed!

Myth:  All people with CP use wheelchairs.

Fact:  Not true at all!  Some people with CP can't walk at all, some use mobility aids only for exercise, some walk part time in the community, and others walk with or without mobility aids 100% of the time.  All ways of moving around with CP are valid!  Personally, I walk without aids inside my home and office, and use two canes, a walker, or a motorized scooter outdoors or in crowded situations.

Myth: People with CP are "retarded".

Fact:  Though some people with CP have an intellectual disability (formerly called mental retardation), many do not.  The statistics I've seen have varied wildly, so I'm not going to cite any statistics, but many people with CP are classified as having "normal" to "above normal" intelligence.  Of course, IQ tests are.....less than useful for people with CP who have fine motor impairment and/or communication issues, so that may be why the stats are so varied.  (I also believe intelligence is a multifaceted concept that cannot be defined by a test, but that's a topic for another time.)

Myth: People with CP have slurred speech.

Fact: Just like everything, this varies wildly from person to person.  Some people can't talk and use a communication device.  Some people find it very difficult to talk and are hard to understand.  Some people only have a little bit of a speech impairment that may get worse when they're tired or stressed (like me).  And others have no speech impairment at all.  Many people with CP (like myself) have trouble controlling the volume of their voice, because of issues controlling the muscles in their lips, tongue, and throat.  I'm not shouting on purpose!  I'm just loud and I can't help it.

Myth:  CP can "get better".

Fact:  CP is a lifelong disability caused by brain damage.  While therapies and treatments can improve function and improve quality of life, that's not the same as the CP "getting better".  Nor is it "better" to walk than to use a wheelchair.  Many children with CP are forced into painful and traumatizing treatments, therapies and surgeries at a young age in the hopes of making them "better".  This is not okay.  Treatment should only be focused on improving quality of life.  As an adult, I can now choose what I do to manage my CP and give myself the best quality of life I can have with the resources I have.

Myth: On the flip side, CP gets worse as you age.

Fact: Weeeeeeeeell.....*makes wishy washy motion with spastic hand* Yes and no.  The actual brain damage does not get worse over time.  CP is not a degenerative disability like muscular dystrophy.  However, aging and changes in lifestyle can lead to an increase in pain and discomfort, and a loss of function.

Myth: All people with CP know each other.

Fact: Do you know all non-disabled people in the world?  Yeah, I thought not.  This does have a ring of truth to it in that in a small area, a lot of people with CP will end up going to the same doctors, therapists, programs, etc.  But just because they have CP does not mean we automatically know each other!

Myth: People with CP die young.

Fact:  While there are some aspects to CP that can potentially lead to an early death (trouble swallowing, leading to aspiration pneumonia, the potential for infected bedsores for people who can't move very much, the high incidence of epilepsy and hydrocephalus in people with CP), CP in itself does not cause early death.  I know tons of people with CP, including several in their 60s and 70s!

Myth: CP is genetic.

Fact: CP is not genetic. It's caused by brain damage before, during, or shortly after birth.  There are some risk factors, like premature birth, that may be genetic, leading to more than one person with CP in a family (especially with twins), but CP itself is not genetic.

Myth: CP is contagious.

Fact:  Do I really need to dignify this one with an answer?  CP is brain damage.  It is not contagious.

Myth: People with CP can't be sexual.

Fact:  I can tell you that sex is one of the most talked about topics in the Facebook group for people with CP I'm in.  People with CP can run the gamut of sexuality, including asexuality.  That's not a CP thing.  That's a human thing.  Just like the rest of the population, some people with CP are more sexual than others.

Myth: People with CP can't be parents.

Fact: Not true!  There are plenty of CPers (or Ceeps, as we like to call them in my corners of the Internet) who are parents.  Check out this hilarious documentary "We Won't Drop the Baby" to see the experience of two parents with CP.

Myth: People with CP sit at home all day collecting a check from the government.

Fact: Some people with CP can work enough to not rely on government benefits like SSI or SSDI.  Some people can't.  Either way, people with CP do a lot more than just sitting on the couch collecting a check!  We go out, we socialize, we travel, we attend concerts, anything that anyone else does!

Myth:  Having CP means your mother used drugs or drank alcohol while she was pregnant.

Fact: While it's true that drugs and alcohol use in pregnancy can cause fetal brain damage, for the most part that's a separate condition (Fetal Alcohol Syndrome and Fetal Drug Syndrome).  CP is more often caused by a lack of oxygen to the brain during birth, or a stroke in infancy.

Myth: If your child is born with CP, you can file a malpractice suit against the doctor who delivered your child and get a lot of money.

Fact: Despite what all those law firm commercials would have you believe, not every case of CP is due to doctor negligence. The vast majority of cases of CP aren't anyone's fault - they just happen.

Myth: CP is a childhood disability.

Fact: While it's true that CP occurs in childhood, not everyone with CP is a kid.  We grow up!  And once we turn 21, we lose access to a lot of the services that are important for people with CP to be independent and in charge of our own lives.  It's a problem, one that needs to be addressed repeatedly.

Myth:  A person with CP can't understand you when you talk, so you should talk to their parent or caregiver.

Fact: Absolutely false!  Even if someone has an intellectual disability or uses a communication device, they can still understand what you're saying.  Talk directly to them, please.

I could go on and on.  Did I miss any myths that you wanted to see addressed?  Let me know!  I hope that you learned something today and that you'll know to counter those myths with cold, hard, facts the next time you encounter them!