More Than A Disability

Did you know Phenylketonuria is a considered a disability? 

I didn't even consider it until my Senior year of High school, when I was told that I should "get some disability aid for college."  Even then I was in denial about it.  I was pretty smart, I got good grades.  I certainly didn't FEEL disabled in any sort of way.

Yet Section 504 of the Rehabilitation Act covers, "physical or mental impairment which substantially limits one or more major life activities."  (Section 504)  For those who aren't familiar with Section 504 it protects individuals with disabilities from exclusion from any government funded establishment.

The law covers a wide range of impairments from learning problems to diabetes.  Including Phenylketonuria.  So yes, apparently PKU is a disability.

That doesn't mean I'm disabled. 

Something that I learned in my Intro to Special Ed class that when referring to someone with a disability you put the disability at the end.  A person with down syndrome is just that.  A person... who has down syndrome.  They are not a down syndrome person.

You put the disability at the end, because first and foremost they are a person.  I am a person with PKU.  (Note: I do use the term PKU'er.  It's a community phrase and is acceptable in the PKU world.)  I am a person... who just happens to have PKU.

It's something that I've stressed a few times.  People are really complex.  They aren't just one thing.  Yes, PKU helps define me.  It's a big part of my life.  But it's not my whole life.  I have other interests. 

While PKU is considered a disability, I am not disabled.  I am a person who has PKU.  And that is something we need to remember about everyone.  They are more than their circumstances.

I'm sorry if I've ramble along.  I hope I've made sense.  I just have so many ideas and information concerning this subject rattling around in my brain.  It was really hard to get this much on my screen.  (I want to say "down on paper"  but it never was on paper.)  ;)  So thanks for reading.  I'll see you again soon.