Thursday, April 19, 2007

Good morning... Not really.


This is what i got to wake up to this morning. My neighbors house burning down... Thankfully it wasnt my house. but when you live in a trailer park all it takes is one spark for tragedy to hit.
we were woken up this morning, either by someone banging or windows exploding. in hindsight i'm no longer sure. Shortly after the propane tank on their grill exploded and a tree caught fire... A really big pine tree. by then sparks were flying everywhere and the back lawn had caught on fire. This is the house that is almost directly behind ours. My dad was out there hosing everything down so nothing would catch on our house.
thank god our house is still standing... again. This is the second fire on our block in 2007. and its only april. Its made me realize how fragile our life is, how fragile stability can be... One spark and it can be all gone. Home, pictures, memories, security.... everything. and truthfully i dont know what my family would do if something like this happened to us.
I wish i could write more or say something profound... but i'm just so shocked, so scared, so overwhelmed...

Sunday, April 15, 2007

Language...

I am a person with an autism spectrum disorder...

The important part of that is that i am a PERSON. I work very hard to advocate for the rights of people with disabilities, including myself. In the last 9 months i have had the priveledge to speak with my state senator and his staff as well as my representatives staff. I have been able to share my story and hopes for equality with congressmens offices and county commissioners. I have done work towards promoting the education of first responders regarding best practice methods for working with individuals with autism. I have been lucky enough to hear dozens of the countries leading experts on disability rights.

and i have yet to meet one individual that does not prefer person first language when describing themselves or their child.

what alarms me in all this is that i have recently encountered another blog. Autism Diva that has no respect for this concept. I do acknowledge that people first language is a choice. but when i commented on her blog about her use of reffering to the community as a whole as "autistic people" I was called overly sensitive. as well as presumptious, for presuming that disabled people care. Well i am a disabled person and i care.

on a group i am a member of the main title is "for people suffering from aspergers syndrome"... again here we are with the language. I am not suffering. There are days that are harder than others, and there are days that i drive my partner nuts simply being me. But this is all part of who i am.

Some refer to people first language as cumbersome and unneccasary, but i differ. If we want to be seen as people same as others we need to adjust how we allow ourselves to be labeled.

Language is a tricky thing. We speak freely and often but how much of the time do we think about what we are saying and how it sets a precident for how people view us or our situation.

today i challenge you to think before you speak... how does what you say set a precident?

Monday, April 09, 2007

Playing favorites...

This is my beautiful neice Lavender... and thats why i'm writing today because i'm annoyed beyond beliefe... My estranged other sister has decided she is the favorite auntie and has started sending me vicious e-mails calling me a druggy and a drunk and a dike... yes a DIKE.... lol nice to know i'm a water feature... i prefer that to being called a dyke by some ignorant welfare queen. It pisses me off though cause i've worked so hard to be clean (3 1/2 years now) and i dont drink a lot (hell i'm still working on the 6 pack from st.patricks day)

I'm annoyed by all of this cause i believe that every aunt has the right to believe they are the favorite... and i'm sorry that i dont have more time to spend with my niece and nephew but lets me realistic, i have a demanding job and i go to school full time. But i see them every chance i get. Fact of the matter is what i am doing the rest of the time is building a life for myself... being a positive role model.

My nephew Tyreal has a disability and i spend a lot of my spare time lobbying for disability rights and funding. This is in part because of him but also because both my brother and I have autism spectrum disorders. But in the long run i think the impact i have on disability related legislation will have a much greater impact on my nephews life and well being than an afternoon watching sponge bob...

I guess the gist of this is that i hate ignorant people...

Sunday, April 08, 2007

Dear Mr. President...

With everything going on in the political climate right now it really struck me hard to hear this song the other day on the L-word. and to think about what i would like to tell my president if he would take a walk with me. I would like to tell him what its like to try to support yourself on minimum wage with a disability, what its like to live check to check 6 people crammed in a tiny trailer to make sure that my brother and sister are provided for and that there is always someone to watch my brother cause we cant afford to pay for childcare for a child with special needs. Tell him about how my parents jobs are always at risk cause they work in fields supported by human services federal and state funding, how his bombs and his war put my family at risk of losing everything. I want to tell him what its like to be married, with out any protection or benefits, what its like to e discriminated against for being in love. and i'll tell him what it was like for stinky to be 6 with his dad far away in iraq. what its like to watch a child grow up with out his father. and thats just the tip.
I have so much respect for Pink for putting this song out there. Its wonderful to see a mainstream artist putting out such a contreversial piece.
Let me pose this question... what would you tell our president...
"Dear Mr. President"
Dear Mr. President,
Come take a walk with me.
Let's pretend we're just two people and
You're not better than me.
I'd like to ask you some questions if we can speak honestly.
What do you feel when you see all the homeless on the street?
Who do you pray for at night before you go to sleep?
What do you feel when you look in the mirror?
Are you proud?
How do you sleep while the rest of us cry?
How do you dream when a mother has no chance to say goodbye?
How do you walk with your head held high?
Can you even look me in the
tell me why?
Dear Mr. President,
Were you a lonely boy?
Are you a lonely boy?
Are you a lonely boy?
How can you say No child is left behind?
We're not dumb and we're not blind.
They're all sitting in your cells
While you pave the road to hell.
What kind of father would take his own daughter's rights away?
And what kind of father might hate his own daughter if she were gay?
I can only imagine what the first lady has to say
You've come a long way from whiskey and cocaine.
How do you sleep while the rest of us cry?
How do you dream when a mother has no chance to say goodbye?
How do you walk with your head held high?
Can you even look me in the eye?
Let me tell you 'bout hard work
Minimum wage with a baby on the way
Let me tell you 'bout hard work
Rebuilding your house after the bombs took them away
Let me tell you 'bout hard work
Building a bed out of a cardboard box
Let me tell you 'bout hard work
Hard work
Hard work
You don't know nothing 'bout hard work
Hard work
Hard work
Oh How do you sleep at night?
How do you walk with your head held high?
Dear Mr. President,
You'd never take a walk with me.
Would you?
Oh! and happy easter... hope the bunny was good to you... or your at least getting some deviled eggs and egg salad out of the whole deal!