Evaluating for Toileting Time is S**T
I posted last year on the day of my Annual-Evaluation-to-Verify-Just-How-Crippled-I-Am. My 2016-2017 evaluation happened just a few days ago and I would like to announce that I finally got my "toileting assistance" time increased from 20 to 30 minutes per day and some extra minutes for "feeding". (Wait! Hold your applause!) Unfortunately, because I have a working washer and dryer instead of a bucket outside to wash my clothes in, I can only get 70 minutes per week of help with laundry instead of 120 minutes. And sadly, I couldn't get any time for exercise because I can't walk. (I guess people who walk are the only people who exercise.) Also, Texas doesn't seem to give a shit about the fact that I can't move in bed or position myself at night. Zero minutes there. So all-in-all, it looks like Texas is granting me a total of 47 hours per week of personal care assistance. (Now you can applaud.) In a few more years, as my progressive neuromuscular disability progresses these measly hours ain't gonna cut it, but thankfully I have friends and family who will hopefully not let me end up in a nursing home. (Stop clapping.)
Here I am with two master's degrees, a full-time job, a home, two dogs, a loving man (who drinks diet coke and coffee mixed together), a garden that yields four cucumbers a year, wonderful friends, and I'm president of a non-profit that I essentially volunteer 20+ hours a week for, AND I have to spend hours begging for personal care assistance in order to survive. I'm in a position where I have to get surgery in order to drink more than 20 ounces of water per day so I can pee more than three times a day. I have to feel pain every single night because I can't move in my bed, or fear aspiration due to not being able to sit up and cough while "resting".
This is what I get in a state with Governor Greg Abbott, a man who uses a wheelchair and has a lifelong disability, because he believes that, "the only disability is a bad attitude." Explain to me how this is fair. Explain to me how in a state that is so conservative with "Christian values" how this is humane and decent.
If there were any way for me to get out of this predicament and pay out-of-pocket for my PCAs, I would. It doesn't feel good having to use state resources, but I can't afford to pay my PCAs a living wage because those wages will equal my salary, therefore negating the point of me working, which will then put me on Social Security and I'll require even more government support. (Ever read Catch-22?) I consider myself very fortunate because it could be much worse, and it is much worse for many, many, many disabled folks in the United States and around the world. I know people younger than myself with my same disability who are living in nursing homes right now. I know people who can't qualify for any care assistance whatsoever because they got married and most benefits programs do not qualify you for care assistance if you're married because your spouse is supposed to drop everything and care for you if he/she truly loves you. Right? Right. (By the way, that's a great "selling" point for your online dating profile - it totally gets you laid.)
My disability has taught me many things, but the lesson I value most is that I need to be grateful for whatever I get because it could all just disappear in a flash. Pretty much every person on this earth will end up with a disability at some point in their life. People like me and the "Anti-Crip", Governor Abbott, just got there a little sooner. My hope is that you'll read and share these words with the knowledge that you're going to be in my position one day. What are you going to do when you're told you can only have 30 minutes of toileting assistance? What are you going to do when your spouse has to quit his or her job to take care of you full-time? Ask these questions and then urge your senators and state reps to vote for theDisability Integration Act - DIA because you'll need it one day.