DIYabled

Tomorrow is the holiday July 4th, so called “independence day”, a fact which has had me wanting to talk about independence and what it means to everyone. 
Independence. 

Tomorrow we will all gather to celebrate Independence Day in the year 2017. What does the word independence mean in the world right now? As a person with a disability this word is associated with getting assistance with things I cannot do because of my disability, but that meaning is not the same for everyone. To people of color it could mean having the freedom to go somewhere without the fear of racially fueled occurrences. For an immigrant it could mean not having to be in constant fear of being torn away from their families. For a person who is part of the LBGTQ community it could mean feeling safe to use the bathroom they feel comfortable using. For women it could mean to feel confident that their gynecological care is available to them. And for the poor to feel they live in a country that will give them opportunities if they work hard no matter what their race, gender, sexual preference or ability is. We are Americans. We all deserve our independence and must fight however we can to get it. That is the most patriotic thing we can do. 
Happy Independence Day, here’s to a future america where all are truly independent!

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Today I read what my friend, Jewel Sanchez, had to do to get her home healthcare. She was able to gain enough independence to move out of her mom’s house and move into her own place with her boyfriend. Great, right? Well because her mother no longer will be there to assist her in her daily life, including her bowel care, bathing and dressing, she needs more hours from a caregiver. Medicaid in Florida denied her request. She was in fact being punished for gaining independence and discouraged from being able to live on her own.

The whole point of Medicaid and Medicare paying for things like doctors, medication, home care, therapy, assistive devices like wheelchairs, and more is to support the independence of People Living with Disabilities so they can live as their able-bodied peers do. Despite the great amount of frustration Jewel must have felt she kept persisting for her rights as Person Living with Disabilities and won.

Read her story and see how her persistence got her what she needed.

It is already hard for People Living with Disabilities to get what they need. Already persistence is necessary to get what we need to live. It truly is a battle and and without this persistence  we are not able get what we need. So it easy to see how the  current danger looming over healthcare makes our community feel so very threatened. This is  one of the many reasons why it is so important to call you representatives and say NO. We want decent fair healthcare for everyone and it’s your job to make that happen!!!

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Today, I am about to embark on a little trip to play music at the ado Ya Hear We ? Fest in Chattanooga. During this trip the band, Kreamy ‘Lectric Santa, will be playing with old friends from the diy music scene. Playing amongst these old friends from when our band first started has got me reflecting on the band and it’s many evolutions and the impact of my injury of my life as a musician.

When I think back when I first had my injury I remembering thinking to myself “Well shit ! What do I do now? I want to keep playing. How the hell can I do this?” It would’ve been nice to be able to reunite with our old friends that we played with, but after 3 years of figuring out how to live life again everyone else’s lives continued to move forward. We were confronted with a tough decision. We knew that we had to still make music but how ? Together Robert and I step by step with the help of friends figured out how to get into a house shows with a flight of stairs  or realizing that every venue do not hav accessible bathrooms, stages, or entrances.

As the years went by Robert and I moved around from LA, to the Bay Area, finally ending up in Asheville. Despite the obstacles that lay in our way to continue to play. We were so fortunate to run across some new friends to help support our passion to make music, travel to play it for people, and make some new friends along the way. When I was lying in that hospital bed 18 years ago I never imagined the possibilities that lay ahead for me and I thank everyone who helped me be realize  these possibilities. Not sure if everyone realized how much they actually contributed but without them I would not have been able to continue to do what I love. Play music as Person Living with a Disability.  Looking forward to see what else lies ahead.

This list is chronological. Robert Price, Rat Bastard, Ed Wilcox,  Ricky Pollo, Damian Rojo, Kerri Drootin , Brian Boyce, Craig DeMayo, Ravi Durbeej, Buddha, Steve Funyon, Jon Paul Burns, Janese Weingarten, Ian Billet, Chris Johnson, Morgan Stickrod, Andy Loebs, Crystal Bradley, Chris Phillips, Abbychuela Kathan, and a double shout out to Chris Head who was in the band twice.

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