Yesterday I tried to roll out a new diary series, but as was pointed out in the comments of that diary, a big meta war was dominating the attention of most people and it was suggested that I try again. So, here we go, with added content on the current Medicaid crunch and how you can help the disabled in your area, as I don't like the idea of simply reposting!
Today is the first of what will be a Monday-Friday regular series of disabled news, action reports, outreach and other bits. I'm hoping, eventually, to even start a PAC with the intention of raising the profile of disability rights, news, punditry and activism.
Growing Involvement in Media and Politics - GIMP, and hopefully one day GIMP-PAC.
So read on to learn about me, what I'll be doing, why I'm doing it and what you can do to help.
In Today's Roundup
An Introduction from The Gimp (Larime Taylor)
Today's Disability News Headline and Action Item - States Cutting Medicaid, Leaving Disabled Without Care - YOU can help!
Closing Thoughts - Get Involved
An Introduction From The Gimp
Greetings,
My name is Larime Taylor, and I was born with Arthrogryposis. At the age of 33, I'm finding myself stuck in a small town with no prospects for a better life for myself and my French Canadian wife, Danielle, who has been housebound due to Lupus. We live with our friend, Aro, who is our care provider.
As I detailed yesterday, life has recently gone from bad to worse. A brief summary:
So, apparently I'm supposed to pay $96 a month out of the $812 I get to live on to pay for the privilege of being able to eat, drink, use the bathroom and wear clothing. My care provider's check is now being docked $96 a month that I, somehow, am supposed to be paying her as my 'share of cost'.
I know $96 dollars sounds like a small amount to most, but to us it's huge. My care provider lives with my wife and I, and we pool our resources to survive, and we're still below the poverty level. Now I'm supposed to be paying a portion of her paycheck - a paycheck I rely on as much as she does - out of my SS money that she relies on as much as I do. This is after they cut nearly a third of her hours for my range-of-motion and exercise assistance as 'not being required for minimal life support'.
I asked in that diary if a daily disabled news digest might be appreciated around here, and occasionally I'll ask for some coin to help put food on my family. It seemed - between comments and emails - to be fairly well received, and a Lobyist/PAC idea was also suggested, so here I am. I'll be taking it one step at a time.
So why am I doing this? Several reasons.
One, very few people realize that there is a whole community of disabled people in this country, and that we have our own arts, culture, issues and ideas. KosAbility, Started by KellyRN2 and friends, is great for a focused look at individuals and individual topics. I really am glad they're doing it, and can't thank them enough for it. What I'm hoping to do is to create awareness of daily disabled news, promote disabled media and, ultimately, push for disabled pundits to start getting exposure in the media. Why are we having discussions about Rand Paul and the ADA on TV and the radio - and hell, even the blogosphere - without actual disabled people being asked to join in as pundits? Well, because there really aren't many disabled pundits.
I want to change that.
Second, I want to create a single, collected, go-to diary on all things disabled, Monday through Friday. From news articles to action alerts, I want to bring it together in one place. Promoting disabled artists and media, highlighting disabled rights and needs, pushing for a pro-disability agenda in Congress and registering disabled voters - we're heavily Dem - are the day to day things this will be focused on.
And lastly, to be honest, I want to do something with the abilities I have and hopefully add a little income, all while trying to improve my life and the lives around me. I sincerely wish I could afford to be altruistic, but I really can't. I need some means of getting out of poverty, and between my art and my ability to write, I'm going to damn well try.
So if you think that this is something that is needed - not just here on Daily Kos, but in general - please take a moment to add me to your subscriptions, hit the Rec button, and leave a comment. I'll tell you at the end of this post how you can help me by contributing to the roundup, and after that I'll give my rattle of the cup.
If you've read this far, thank you, and I hope you stick with this endeavor.
Sincerely,
Larime Taylor
Today's News Headlines and Action Items
I want to begin by highlighting some excellent Disabled News resources on the web. If you haven't, please check out the following sites!
Patricia E Bauer - Today's top post is about the bill currently going through Congress to remove the words 'mentally retarded' from Federal law and replace it with a more current and less hurtful term. I know I've ruffled feathers with my opinions on words (I personally hold that words only have the power you grant them), but I am sympathetic to those who are hurt and demeaned by words in their daily lives. The first step to disarming loaded words like 'retarded' is getting them removed from our laws and medical texts.
Disability Scoop - They currently have an AWESOME photo piece on one woman's challenge to American Apparel on just what is sexy. I'm seriously in awe of her.
Disabled World - A world-wide site dedicated to health and news for the disabled community. They even have sections on travel and sports!
In the coming days I'll be choosing stories from these and many other websites and highlighting them here, along with any commentary and opinions I might have. I will also be alerting you to issues that need your help, and asking you to help make a difference.
And now, to the day's chosen headline and action item.
DISABLED FACE HARD CHOICES AS STATES SLASH MEDICAID
Via the Wall Street Journal...
Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse's assistants to get her in and out of bed, bathed, clothed and fed.
In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.
After several days of reduced care, the local office of the South Carolina Legal Services appealed the cuts on behalf of Ms. Hickey. Her hours have been restored pending the appeal.
I know exactly what this feels like.
One thing you aren't hearing enough about in all the unemployment, recession and economic news is that states under budget crunches are cutting Medicaid services that pay for aid care like Ms. Hickey and I receive. Instead of closing corporate loopholes, raising top tier taxes or finding other methods of increasing revenue, states are asking those lest equipped to handle it to bear the burden of the deficits.
Think about it for a minute. Raising taxes is naturally a death sentence in politics, but while politicians fear making those most able to help out, they're forcing those least able to go without.
Go without the ability to use the restroom.
Go without the ability to eat or drink throughout the day.
Go without the dignity of unsoiled clothes and a full stomach, things everyone else takes for granted.
No matter how bad unemployment may be, or how tight family budgets get, they can at least use the restroom or eat what food they can afford whenever they like. We disabled are being denied that basic human decency.
Call your local in home care providers' union - the United Domestic Workers of America, or your local Nurses' Unions to find out how you can help them raise awareness of this situation. Consider offering to volunteer an hour a night to help a disabled person have clean dishes or something they can eat.
We need your help now more than ever.
Closing Thoughts
In future roundups this space will be dedicated to my rants and general musings on disabled life, or those of guests. Today I want to use it to tell you how you can help me to make this a successful and long-term series.
First, PLEASE feel free to send me links you think I might find interesting. My email is listed in my user info. Also, feel free to post links in the comments, below.
If you have a group, a cause, a friend or relative that needs help, let me know. I want to try to spread around the kindness that Daily Kos users have to offer. Likewise, if you know any disabled people, please pass along this roundup link and the resources I dig up. Ask them if they're registered to vote. If not, help them find out how their state might help them do so. The Secretary of State webpage in most states will include information on accessibility.
Lastly, if you want to contribute essays, reports or anything else, please let me know! I will probably need the help!
Thank you for reading, and I hope to see you in the comments!