Disabled Life

Accessible, But Not

~ shawnaborman ~ Leave a comment

Howdy, howdy! How’s everyone doing this lovely Wednesday? Things here are about normal. We have reservations at Texas de Brazil for Thanksgiving this year. Dad hasn’t felt like cooking lately and no one ever invites us anywhere, so we made our own plans. Do you have plans for Turkey Day? Anyway, I don’t have much to ramble about lately, but while making the reservations, I started thinking about the Dallas location and how it was “accessible.” I usually try to stick with stories about cripple privilege and the good things that come with being disabled, but I see a lot of people talk about their experiences with accessibility that really isn’t accessible. Things that don’t really bother me, but apparently make other people uncomfortable. I don’t want people who read my blog to think I’ve never run into these issues, because I have. So, here are a few examples of accessibility that isn’t really accessible that I’ve encountered in daily life.

When they say “It was accessible…”

1. At Texas de Brazil in Dallas, their accessible entrance was a ramp in the back by the dumpsters that led to a hallway by the kitchen which led up front. We haven’t been to this location in years, so I don’t know if they’ve renovated or something. Anyway, I never thought much about it, but apparently entrances like this make people feel like they’re something to be ashamed of, trash smuggled in through a back door. I can see where they’re coming from. I never really cared as long as the service was good and the staff didn’t get annoyed. But the real reason this kind of entrance isn’t actually accessible is because someone has to go to the front entrance to let them know I needed to use the ramp. There are disabled people who go out alone. If they can’t get in the front entrance to let someone know they need the ramp at the back entrance, it’s not really accessible, is it? I’m always with someone, so it’s not a big deal for me, but it’s still weird. Anyway, there are other locations that are far more accessible, but we actually stopped going to the Dallas location because our van bottomed out getting in and out of the parking lot.

2. The Mansion at Turtle Creek’s accessibility was kind of wild. It’s been just about 10 years since we went. My 30th birthday. So I really hope they’ve renovated, but I doubt it. Anyway, we get there and the initial entrance is perfect. No steps. Nice people to get the door. Inside, there are two or three steps up to the dining area. No built in ramp. They bring over these two little ramps that fit the steps perfectly that they can line up with my wheels. Okay, cool. But it’s so steep that Dad and one of the waiters has to assist me just so I don’t flip over. Technically accessible I guess, but it’s actually pretty dangerous for me and whoever has to assist me. Plus, it was kind of embarrassing to require so much of a todo just to get up a couple of steps. Overall, it got the job done, but it wasn’t really all that accessible.

3. This is really the only one that ever pissed me off. SMU. The accessibility at that school is so hit or miss. In some of the older buildings, they have elevators that barely fit a skinny person standing up. Yes, I graduated forever ago, but those elevators still exist. Still. I’ve asked. The accessibility answer was to move my classes to other buildings. The excuse for not installing larger elevators? They can’t afford it. Meanwhile, all the sports crap was constantly being upgraded. There was also a running joke when I was there that SMU didn’t care about anything needing repairs/upgrades as long as all the fountains worked. Other accessibility features that weren’t accessible were the door openers. Even on the new buildings, they were either too high, set off to the side where they weren’t even reachable, or they were tiny little things you had to stick your finger in a hole to get to. There were only like 3 that I could actually use myself. It was so annoying.

But yeah. Accessible things that aren’t actually accessible are an ever-present issue. I just try to ignore them as much as I can. I’m lucky I don’t go out by myself or it would be a much bigger problem. What kind of accessibility issues have you encountered where accessible wasn’t actually accessible? Feel free to share your thoughts or questions here or on my social media pages!

Cripple Life in Modern Times: Medicaid

~ shawnaborman ~ Leave a comment

Hello, hello! How’s everyone doing this lovely Wednesday? Things here were annoying this past week. The good: Dad’s colonoscopy was fine and we got food afterwards. In case you don’t know, you do NOT have to be sedated to get one, so don’t let that stop you. You have to be adamant about it and remind them every time they call and day of, but yeah. It’s fine. The bad: on Friday, I got a letter saying my Medicaid was rejected because I didn’t turn in my renewal paperwork. That was a blatant lie. I turned it in 5 days after I got the initial letter saying that I needed to do it. I later found out some stuff was missing, but all they said I needed to turn in was the signature page. I did that on the same day I got the letter telling me stuff was missing. Ugh. Anyway. I have nothing to blog about, so here are the details of the Medicaid clusterfuck if you’re interested.

October 17th: Got a letter canceling my Medicaid because they didn’t receive my renewal paperwork.
Uh, what? That is completely untrue. Here’s the original timeline:
July 12th: Received an email saying I have a letter in my YourTexasBenefits account. The letter informs me it’s time to renew my benefits and I have 30 days to do it.
July 17th: I submit the paperwork via my CLASS case manager who faxes it in.
August 4th: I haven’t heard anything, so I call to make sure my paperwork was received. I’m assured it was and told it could take 30 to 90 days for a response.
August 29th: Received a letter via snail mail saying that my paperwork wasn’t received and I had 5 days to submit any missing items. Called the same day (recorded every call from here on) and was told they just needed the signature page. Sent the page that day.
September 2nd: It was a holiday weekend, so this was the earliest I could call to confirm they received it. They did.
September 11th: Got an email saying that my paperwork wasn’t received. Called and was told everything was received and under review. All I could do was wait.
October 17th. Denied. Called and was initially told that my paperwork was not processed. After she spoke to her supervisor, I was suddenly at fault for not sending the signature page in within 5 days of the letter even though I sent it the day I received the letter.
October 20th: My CLASS caseworker came over and we called together. Got swapped around to three different people. One had to dig around to find my paperwork, the second swore it hadn’t been submitted in a timely manner until she actually looked at the dates, and the third one took one look and said I submitted everything when I was supposed to, so she reopened my case and input all my stuff, only asking me to verify that I only have one bank account. She approved it and said there shouldn’t be any gaps in my coverage.
October 21st: Received a letter via my YourTexasBenefits account with the approval letter.

I really don’t know why they have to make everything so difficult. Why can’t they assign a case worker to be on your renewal or application or whatever from the beginning of the process to the end? It doesn’t have to be the same person every year, but it would be so much easier than cold calling 2-1-1 and hoping you get in touch with someone who knows what they’re doing. It would also be better for them because they wouldn’t have to research every call they get and hope everyone else took notes. The way they handle Medicaid in Texas doesn’t make sense to me. But I’m good for another year (maybe, who knows with all the cuts the Nazis… oops, I meant Republicans… are trying to push through), so I’m going to stop thinking about it now.

Being Cripple Is Annoying

~ shawnaborman ~ Leave a comment

Hello, hello! How’s everyone doing this lovely Wednesday? Things here are usual. Medicaid has decided it’s that time of year to prove I’m still worthy. Poor. Cripple. Whatever. So, I spent most of the day filling out a 20 page form. None of the answers has changed except how much Social Security I get, but I still had to trudge through the entire form anyway. Now, I just need to take a picture of my ID and get copies of my bank statements from April through July. Easy enough, right? But no. My bank just overhauled their system and even though everything was supposed to be up and running on Monday, they don’t have online access to any statements but June. Ugh. If that’s not up today, I’ll have to call them and convince them to email the statements to me. Once I get those, I’ll send everything to my CLASS case manager and she’ll fax it to Medicaid on my behalf so they’ll realize I’m on that particular program and hopefully not argue with my eligibility. If they had told me a week ago (before my bank decided to “improve” things and I could have just downloaded the statements) or waited until October, which is when I usually have to renew, I probably wouldn’t be complaining. I just hate having to call people. And I hate redundant forms. I just hate the whole process of being reminded I’m a poor cripple leeching off of society. Anyway, it’s late and I don’t feel like coming up with something nice to ramble about. Here’s a pretty picture by Yuumei instead of a real post.

Random Shower Thoughts

~ shawnaborman ~ 1 Comment

Howdy, howdy! How’s everyone doing this lovely Wednesday? I’m not okay for a plethora of reasons. No one cares. The people who do care can’t do anything. So, let’s move swiftly along! I don’t really have much writerly or bookish stuff to ramble about, so I guess I’ll find something else. Our old shower head broke. Again. It was a fancy Delta with 5 sprays and a lifetime warranty, but every few years the color starts peeling off the hose and the switch to change sprays breaks because, while most of the shower head is metal, that part is just plastic. This was the second or third replacement we’ve had since 2018. It’s just not worth the hassle to get another one. Instead, Dad went looking for all metal shower heads in an oil-rubbed bronze finish (I guess no one likes that finish because it’s pretty difficult to find). That’s when he found The Shower Head Store.

Dad decided to go with the All Metal 3-Spray Dual Shower Head Combo with Hand Held & Rain Shower. And yes, it comes in multiple finishes including oil-rubbed bronze! It’s also a small company that seems to be customer focused still, which is always nice. We did have an issue because they originally sent the single spray head instead of the 3-spray. Dad initially emailed them, but decided to call them after 24-hours because I need the jet spray to get properly cleaned and he didn’t want to wait too long. Anyway, he got in touch with someone named Temar who helped him out and asked for pictures. After the initial phone call, everything was done via email. The shower head was out of stock, but they got it in within a few days and sent it right out. So, customer service and Temar are great. They do however spam you with auto-emails telling you to register your product and review it and whatever, which was the only annoying part of the process since we didn’t even have the right product at the time. Otherwise, accidents happen and they fixed it in a timely manner.

The handheld portion of the shower head is nice and works great for my needs. I require full assistance in the shower, so all of the ability issues I mention from here on out are just random thoughts. It’s not a comprehensive list and every disability is different so my thoughts might not even apply to you. Anyway, the shower head is a little heavy since it’s metal, so if you’re cripple and weight is a concern, you might want to find out if you can handle it before buying. The three sprays are wide (the typical shower head), massage (the single jet), and mist (the stinging bees of doom setting). The first two are exactly what I need. The jet does sting a little from certain angles, but it’s strong and gets the job done. I hate the mist setting. I always hate it. It’s buzzy and stingy and I don’t know what kind of masochist enjoys it so much that they keep including it on shower heads in general. But other than that, no complaints about the sprays. Switching between sprays looks easy enough, but I can’t do it myself because I don’t have the strength or gripping abilities, so I don’t really know if it’s cripple friendly for people with grip issues or not. There’s no trickle valve built in, so if you need to be able to reduce the flow to conserve water while soaping up or whatever, you have to buy an add on. It gets installed between the hose and handle, so the placement is a bit awkward and easy to accidentally activate or deactivate. It’s super easy to press though, so that’s good for cripples with strength issues in their fingers.

The rain part of the shower head is interesting. Tried it. It feels nice. I can’t really use it. But Dad loves it!

So, yeah. It’s a good shower head and works great for us.

Disability Pride Month

~ shawnaborman ~ Leave a comment

Hello, hello! How’s everyone doing this wonderful Wednesday? As I was thinking about what to write for this post, I was faced with a couple of stark reminders of why Medicaid and proper healthcare and assistance for people in times of crises are super important. You know… all that stuff the Republicans are hellbent on getting rid of in order to seemingly help the deficit so some rich people can get tax breaks which will add trillions more to the deficit than they save by gutting social programs. Anyway, I’m starting to rant and that isn’t what this is for.

My first reminder of why these programs are important was the batteries that were installed on my chair today. The old ones were dying pretty quickly and I wouldn’t have been able to afford them out of pocket, so we started the process to get them replaced. When did this process start? A week ago? It couldn’t take that long to just get batteries, right? May 22nd. I started the process on May 22nd and they were finally installed July 1st. Don’t be fooled when people tell you that countries with universal healthcare have ridiculous wait times. Ours are usually worse or about the same. Cutting funding to Medicaid will only make those times worse for the people lucky enough to still be covered. It’s going to make a lot of things worse.

The second reminder is the most important. My friend’s newborn nephew has heart issues and requires surgery. Before they can perform surgery, there’s an infection that has to be taken care of. There’s no telling how long this baby boy will have to be in the hospital. A friend of the family created a GoFundMe for them because the financial burden of having to take time off work, travel back and forth to Seattle, pay for lodging and food, and also worrying about their daughter is already taking its toll. They need help for a situation that no one can ever plan for, but instead of having access to government programs designed to help in these situations, they have to rely on people on the Internet who try their bests to help each other. So, I’m sharing the link to their GoFundMe below in the hopes that some of the kind people on the Internet will see it. Share it on your pages if you’re willing. The wider the audience, the better.

Support Charlies Heart Surgery Journey

Anyway, stay strong and have a good Disability Pride Month despite everything going on in D.C. We matter. We are not burdens. We are not leeches. We deserve to live, not just survive.

Something Pretty

~ shawnaborman ~ 2 Comments

Howdy, howdy! How’s everyone doing this lovely Wednesday? Dad’s been sick (Sunday and Monday), so my usual shower day (yes, a shower is a day long event) got pushed back to Tuesday when he felt better. I was lazy and didn’t write a post on Monday, so since it’s already after 7:30pm on Tuesday, you get a pretty picture by Yuumei! Maybe one day, I’ll explain why shower days are so long if you’re interested in cripple life. Anyway, I’ll be back next week with 39 random things you never wanted to know about me because my birthday is Sunday. I’m old. And hungry. Dinner time!

Pulling an All Nighter

~ shawnaborman ~ Leave a comment

Hello, hello! How’s everyone doing this lovely first Wednesday of August? It’s summer in north Texas, so things are toasty. It’s actually Tuesday and I’m preparing to stay up all night so I can have a phone meeting at 10:30 in the morning on Wednesday. Why, you ask. Because it’s easier than going to bed early, but still laying awake until 4am, just to get up at 8am to be in my chair and prepared to make the call at 10:30am. Yeah. Getting up is a whole 2-hour process. So, I hate anything before about 2pm. But I do love the nighttime. I’m usually pretty productive. But it’s also boring because all my friends have day jobs or kids or whatever and no longer lurk online all night with me. Ah well. I have stuff to do.

The plan includes, but isn’t limited to the following:

1. Catching up on reading. I’m a little behind on a couple of my review books. I somehow ended up with 4 books to review between now and Oct. 2nd. I should be reading the one for the end of this month and the one for mid-September, but I haven’t started the second one yet. I’m only two days behind, though. It’ll be easy enough to catch up tonight.

2. Do a couple of things for Dad. One involves his watch and the other involves signing him up for something. These things should be relatively quick.

3. At least read through a short story I started back in June. I should even try to work on it. This will depend on how long reading takes and whether or not I can find the motivation.

4. Mindless games. Especially when the first wave of tiredness hits around 4am. It usually takes about an hour to shake it off. Mindless games are great for this time.

5. X-Men cartoons. Maybe. I keep telling myself to watch the new one, but I haven’t yet. I also want to rewatch the old ones. Or maybe I’ll rewatch Gargoyles. Or The Weekenders if I can find it. Or maybe I’ll just skip TV. It’s not important.

That’s the plan. Wish me luck with the meeting!

Another Rant

~ shawnaborman ~ Leave a comment

Hello, hello! How’s everyone doing this lovely Wednesday? Things here are annoying, but fine. It’s late on Tuesday because I spent too much time on the phone with Medicaid. Again. Then, I avoided productivity in favor of watching TV with Dad. Shame on me, I know. I’m mostly just having trouble mustering up energy to do anything. I wake up tired. I stay tired despite having my usual amounts of caffeine. Sleep has been normal (just meh). Everything is just meh. Anyway, since I don’t have anything to ramble about, I thought I’d go on a rant. Don’t worry. Next week is the book review, so it’ll be a regular post.

I don’t remember if I’ve talked about it here, but Medicaid decided to force me to sign up for something called Star+Plus back at the end of May. I looked into it and everything I read said I couldn’t be on that program because I’m also on a program called CLASS, plus I’m on Medicare. So, I asked my CLASS case manager and she assured me I could be on Star+Plus, but not on the waiver program version of it. I took her at her word and didn’t think much about it.

Fast forward to July 1st when the program is supposed to activate. Some stuff has occurred that has me questioning things, so I do another search about Star+Plus. I find one super hidden thing that says people on CLASS can be on the program, but everything else says I’m not eligible for it. Add on the fact that I try to activate an online account with the insurance company that handles Star+Plus and keep getting told that I don’t exist, and I start getting antsy. Being the paranoid person I am, I contact Medicaid multiple times over the next week and a half to ask what’s going on and why my account isn’t working and how come they tried to put me on this program when I’m already on this other program, etc. For days, I get passed around to different departments and told conflicting things until someone finally escalates my case.

I feel like a Karen when I have to deal with the government and I’m not sorry about it. I’m always polite, though.

When someone finally calls at 8:30 in the morning, I don’t answer. I call back and get swapped around a couple of times until someone can tell me the woman who called just wanted me to know she was investigating my case and would call me when she knew more. Why she couldn’t just tell me that in the message, I don’t know. So, I wait and I check my YourTexasBenefits account every single day. On Thursday (Dad’s birthday), all mention of Star+Plus is removed from my account. Yay, right? I figure I’ll be getting a call that everything is straightened out and I’m back on traditional Medicaid.

Still hadn’t heard anything yesterday, so I called to get an update. I get passed around a couple of times because it’s the government and they refuse to give you a direct line to the department you need. But I end up on the phone with someone in the wrong department but who actually seems to know what she’s talking about. She confirmed I was right all along and that being on CLASS and Medicare precludes me from being on Star+Plus. Everything in her system indicates that I’m back on traditional Medicaid. She made a note that all mention of Star+Plus was removed from my YourTexasBenefits account. And she got in touch with the escalation unit for me. Supposedly, they’re still waiting for some kind of confirmation from Medicaid that I’m back on traditional Medicaid and that’s why they haven’t been in touch.

So, this has all been a case of the left hand not knowing what the right hand is doing. Because government. And I’m still waiting to officially be told I’m back on traditional Medicaid. Such fun. Ugh.

It’s Disability Pride Month Again!

~ shawnaborman ~ Leave a comment

Howdy, howdy! How’s everyone doing this lovely Wednesday? Things here are okay, I guess. We had a nice little BBQ with the Minion, his wifey, the family, and the new neighbors across the street on Saturday. Other than that, things keep going wrong for Dad and I’m dealing with government bullsheet surrounding my benefits. Because of that, I forgot July is Disability Pride Month. I’m not feeling very pride-y. Every time I finally feel like my benefits are settled and I’m coasting along, the government decides to “improve” something that screws everything up. And it doesn’t help that I have to fight for everything I need. I’m dreading the upcoming election. If Cheeto gets in and that Project 2025 gains traction, everyone is going to be screwed except maybe super rich white folks. So, even though I’m not a fan, fingers crossed for Biden and the status quo! But I’m starting to ramble. This is your yearly reminder that Disability Pride Month exists. Disabled people are worthy of all the same things “able” people are. We are not burdens or drains on society or dirty little secrets. We are human beings. And, according to WHO, approximately 1 in 6 people are significantly disabled and that number is rising. Yay for fun facts!

Anyway, I decided to share an explanation of the Disability Pride flag. I might have done this before, but I’m too lazy to check my previous post.

Ann Magill’s original idea contained bold colors and a zigzag design, but after complaints from individuals with sensory issues (the design triggered migraines and created a strobing effect when scrolling), she revamped the idea with straight lines and muted colors that were grouped differently to avoid the negative effects. Here are some of the meanings behind the flag:

Black: The black background symbolizes the mourning of disabled people who have been victimized by ableism or lost to disability-fueled violence, abuse/negligence, and death.

Diagonal stripes: The stripes cut through the darkness (i.e., barriers).

Multi-colored: The disability pride flag includes all six standard international flag colors to indicate that the disability is a global thing.

Green: Sensory disabilities (blindness, deafness, lack of smell, lack of taste, etc.).

Blue: Psychiatric disabilities (anxiety, depression, etc.).

White: Invisible disabilities and/or undiagnosed conditions.

Gold: Cognitive and intellectual disabilities. Neurodivergence.

Red: Physical disabilities.

A Little Rant

~ shawnaborman ~ Leave a comment

Howdy, howdy! How’s everyone doing this lovely Wednesday? Not a lot going on here. Just stupid government crap regarding my benefits. I can’t entirely blame the government for all my stress this time, because everything up until today was something else entirely and the people involved already know I’m not happy about how everything went down. Let’s just say stuff hasn’t been getting done in a timely manner. But today (Tuesday), I’ve spent far too much time trying to justify needing another hour of care every day. And I get it. The government doesn’t want to give just anyone benefits. They’re like giant companies that way. “You want healthcare and to be able to afford rent and food??? Damn commies.” But also, look at me. It’s pretty freaking obvious that I need care. I promise I’m not just a mooch. If they’d let me earn more than $1900 and change a month without screeching about taking my Medicaid away, I’d even try to be a productive member of society. But no. They don’t allow you to get to a stable place before they rip away the benefits that keep you alive. Just stay poor. Ugh. But that’s a different rant. Let’s get back on track.

I’m on a program called CLASS. They offer various services, but I only use the healthcare assistance service where they pay (actually Medicaid pays) for someone to take care of me. When I first got on the program at 18 after a ten year waitlist (yeah, no one even remembered signing up when we got the letter saying I was cripple enough for them), they only paid for outside help to come in. Eventually, they started paying family members, so Dad gets paid to take care of me. With all the prices on the rise and the fact that home healthcare works hadn’t gotten a raise in a ridiculous amount of time (because, you know, the Texas government), Dad requested an extra hour a day (no, he doesn’t get paid 24-hours a day because apparently the government thinks cripples are robots who just power down and require no assistance for far too many hours a day/night… as if normal human beings don’t have to pee or worse during sleep time, so cripples certainly don’t). But he’s up to 14 hours a day and the government is balking at a 15th hour. They’re forcing us to justify the request instead of just looking at my file and seeing my diagnosis (an incurable disorder that gets worse over time) and the fact that I have never asked for anything I don’t need and realizing that yeah, she needs help. It doesn’t help that they don’t reach out to me directly. There’s a middleperson. Things get lost in translation.

Anyway, it’s almost 8:00 and I’m getting hungry, so I’m going to stop ranting. But anyone who says cripples don’t work for their benefits and just get handouts have never had to deal with the government (state or federal). Fighting for shit I need is an entire job in itself. They should be paying me, but then they’d probably kick me off everything anyway. Blargh.