Today is National Cerebral Palsy Day, not to be confused with World Cerebral Palsy Day which is in the fall. Lest we forget that this month is Cerebral Palsy Awareness Month anyway.
Can I be honest with you for a minute?
I get so peeved with how disjointed the CP community is.
I know we’re all aware of CP every day. It’s a “side effect” of living with it, naturally. But it’s hard to get people’s attention when we’re commemorating so many different days, with similar names. And let’s not forget about the Green Dilemma.
When it comes to effective awareness more isn’t always better.
I united front most come first.
There is true power in numbers here. CP is the most common motor disability in childhood (and I wonder just how common it is in adulthood because of that statistic). So we have the numbers right there.
What we lack is unity.
I often ask myself why that is. I don’t keep myself up nights thinking about it but it’s rarely far from my thoughts. Other health related communities have strong communities. Why doesn’t CP? Where (or what) is the disconnect for this community in particular, more importantly, how do we fix it?
I don’t know where the divide truly is, but allow me to tell you about some of the divisions I’ve noticed, in no particular order:
-Doctors neglecting to recognize and voice the need for a transition process and quality providers.
-Parents of CP kids not acknowledging potential commonalities between their child and older individuals with CP (and/or vise versa).
–The range of ability/disability CP caused by CP itself.
-Lack of organized advocacy, whether under advocating or over advocating for one individual (or a small group).
-Individuals not wanting to disclose their disability.
-Hesitancy (or lack of) role models.
-Lack of large organizations genuinely serving their intended population.
-Lack of awareness of the existing community and seeking partnerships.
There’s more but those are just the highlights, in my opinion.
Tell me. What do you think helps or hurts in the success of health/disability related communities?