Tuesday, September 16, 2014

The Switch to Online Courses Presents Challenges for Students with Disabilities

Slate has an article about how universities are switching from using original content generated by professors to online courses produced by the major textbook companies. It's a very disturbing trend.

My child is taking one of these Pearson math courses in college right now. Ze also took an online math course in high school. The high school version was great for a student like hir who could zip through all of the assignments at hir own pace by utilizing resources like Youtube for learning concepts that weren't explained well by the course material. Ze says the math course ze's in now is going well. Still, I worry about students with other kinds of disabilities.

Students who need screen readers or video captions are going to face barriers because of the way that many of the sites are set up. I seriously doubt that the companies are going to produce alternate versions of each course's material in order to accommodate students with disabilities. So, what are these students supposed to do when these online courses are used for the majority of freshmen and sophomore level classes? This is obviously the direction that things are headed. As usual, people with disabilities are the first to be sacrificed when Western educational models mutate.

Monday, September 08, 2014

Goats and Disabilities

I spent the morning mucking out the enclosures for 17 goats. It was really, really physically taxing. After the first pen, I regreted taking this job. When you're sweeping and shoveling goat poop, your clothes get covered in a fine dust consisting of dirt, hay, and dried poop. It was impossible to keep cool. I quickly ran out of water in my thermos and I was too far from the house to go back for more.

Still, I kept at it. The second and third pens were easier and I think it was because I developed a strategy for cleaning them. The fourth and last pen was THE WORST. I couldn't even get to the wood on the floor without having to break up slabs of compacted crap. Regardless of those challenges, I got it done.

I'm proud of myself, I think. Well, what I'm most proud of is that I was able to get my body to accomplish all of that. My body often does things that I wish it didn't and then, at other times, it just won't or can't do what I want or need it to accomplish. It feels great to be able to go beyond what's safe and pain-free. I did what I went there to do and I did it well. After it was over, all of the hard work that it took to get to that point sort of faded away. I got to enjoy a cold drink, come home and take a shower, and now I'm going to schleep!

Wednesday, August 06, 2014

My Little Worker Bee

Tonight, my kiddo had an interview for a bar-tending position at a Japanese tavern in the historic Vieux Carré (French Quarter) in New Orleans. Hir aunt sings and plays the piano there every week and she put in a bon mot with the owner. My child just called and told me that ze begins training on Tuesday. I'm so proud of this kid.

Being a college student living in a world famous city might result in a young person partying way too much and getting distracted with all kinds of questionable activities. This is especially true for a young person with ADHD. But my darling chose to stay busy by getting a job. Now ze has TWO jobs. That plus going to school full-time might be too much for some, but a kid like mine has to stay really busy in order to keep out of trouble.

I won't pretend as if ze never makes poor decisions, because I dislike when people get on social media and make it sound like their kids are perfect. My child still has a lot to learn and a long way to go before ze's ready to be completely independent. However, I'm really grateful for the way that ze has dealt with the challenges placed before us in the past couple of years.

Wednesday, July 09, 2014

The Cost of Daring to Exist as a Queer Person of Color With Disabilities

How College Wrestling Star "Tiger Mandingo" Became An HIV Scapegoat

This is really a(nother) case of a LGBQ person of color with disabilities being criminalized for daring to try to be a part of the non-disabled world. This man was used and exploited and now that they've gotten all that they can out of him, they're sending him to prison and trying to forget that he was ever there. Where are the LGBTQIA organizations now? Why are they always nowhere to be found when the LGBQTIA is Black?

A few days ago, a friend brought up the problem of white older queers who exploit young queer people of color to indulge their racial fetishes. I think the same power imbalance exists with Johnson and the white men who chose to have sex with him. In the article, one of the men makes this quite clear when he talks about how Johnson was "only [his] third black guy" and that he wanted to have unprotected sex because Johnson was "huge".

There's no mention of how Johnson had severe learning disabilities and could barely read or write. How is it not predatory for these non-disabled white men to use him as some sort of stud even though Johnson is disabled? Why is no one asking how Johnson was infected in the first place? Who infected HIM and why aren't they being investigated? Well, we know the answer to that. It's because it doesn't matter to the world how Johnson is taken advantage of. Never mind the fact that every single person who slept with him was more than willing to expose him to whatever STDs they might have. It only matters that white non-disabled men might have to suffer consequences for exploiting him.

Tuesday, July 01, 2014

How The Healthcare Mandate Saved My Nephew's Life

For those fighting the good fight, here's a real world example of why the healthcare mandate is a good thing:

Do y'all remember when I posted the gofundme link for my nephew who was diagnosed with leukemia? Thankfully, the donations that people sent made it possible for him to have his mother there with him while he went through treatment. If you haven't been through cancer, I hope you at least have the sense of compassion and empathy necessary to understand why a child would want their parent around while strange people poke and prod and inject potentially lethal chemicals into their body. The only thing worse than being a child with cancer and not having anyone there to help you through it is being a child with cancer and not being able to receive care at all. That's what I really want to talk about.

My sister works full-time. She PAYS for insurance through her job's group plan, so skip the drama about people wanting something for nothing, s'il vous plait. Her 2 kids were both created with her husband, so skip the drama about people being irresponsible with their sexuality. Despite the fact that she is a good and loving Christian woman, that marriage didn't last. That shouldn't be a surprise. Christians actually divorce more than non-Christians in the USA. Still, one would think that the father could help her through this ordeal with their son, right?

Well, that wasn't possible. You see, he has lung cancer. Like me and like their son, he was raised in a little part of the country called Allée du Cancer (Cancer Alley). Look it up, if you want to understand why I'm always talking about some new person in my life who has been diagnosed with cancer. Why, you'd almost think that the government should do something to stop companies from poisoning us! But I guess folks who are for "less government" wouldn't approve of that sort of interference with the "freedom" of companies that are allowed to operate here. My sister actually moved across the country and got another job to provide a better life for her kids, but it wasn't soon enough for her son to avoid becoming a part of the cancer statistics here.

So, there it stands. My ex-brother-in-law can't work, because he's dying, so he can't get insurance through any job. That means he can't cover his kids on any plan and my nephew must rely on his mother's insurance. Now, let me explain how this dealing with cancer and insurance companies has worked in the USA. Insurance companies were able to deny care to people, PEOPLE WHO WERE PAYING FOR IT, using multiple tactics. by claiming that a condition existed before the purchase of the policy. They were also able to deny care to people by putting a cap on the amount of money they'd spend on the care of any person on the policy.

If science education was what it should be, people would know that we all have "cancerous" cells in our body. However, it's only when those cells reach a certain mass that doctors make a diagnosis of cancer. Since doctors can only detect cancer once a mass of these cells reaches a certain size, it is never possible for a doctor to prove exactly when it first developed in a person's body. Because of that, unless you were on the insurance plan from birth, the company could always claim that you got cancer before you purchased the policy. This is the "pre-existing conditions clause". The healthcare mandate makes it illegal for insurance companies to deny care to people paying for it simply because the person may not be able to prove when they developed a condition. Without this mandate, people who were deemed to have pre-existing conditions could pay for their policies faithfully and on time and still be denied care.

There are some folks who weren't affected by the pre-existing clauses, because they were lucky enough to be on the same policy since birth or because their doctors were able to prove when their condition started. They were still screwed, though. Insurance companies were allowed to place a limit on how much money they would spend on a person, even if the person did meet the qualifications for coverage under the plan they were paying for. This is the "cap" that you may have heard of. Now, if the worst thing you've ever had is the flu or a broken limb, you probably won't reach that cap. However, if you have a condition like incurable cancer or renal failure or you're in need of an organ transplant, you could reach that cap in just a few years or even a few months. After that, all of the insurance that you paid for, faithfully and on time, didn't matter. You'd have to find some other way to pay for your care. If you couldn't do that, you died. It's really that simple.

Oftentimes, people who reached the cap on their insurance plan were forced to stop working at a time when they need money the most. It may be hard for some folks to believe but, sometimes, it's hard work to continue showing up for work when you need a new lung or you have a tumor restricting the blood flow to your heart and you're not able to afford the necessary treatment for it. I actually worked throughout the chemo treatments for my lupus, but the radiation for my cancer is what made my work and school life come to a halt. I guess some folks would just call that lazy and irresponsible though. However, being a pharmacy technician means working with people who are sick and having a fifteen inch open wound stretching across my back and an immune system compromised by both lupus and cancer makes for a legitimate claim that one can no longer do their job. You're free to decide otherwise, of course. Anyway, when you stop working, any insurance policy through your job is cancelled. That means the job of paying for your care has solved itself, as far as the insurance companies were concerned.

So what happened to those people? Well, if they could prove that they were completely disabled, then they MIGHT qualify for healthcare through the Social Security Disability program. Lord knows these jerks who whine about the existence of government run healthcare weren't stepping in to keep these disabled people alive. Of course, S.S. turns down most disabled people who apply for care. It decided that though I had an incurable cancer and systemic lupus, I didn't meet their standard of what it meant to be truly disabled. It took them over a year to let me know that, though.

Meanwhile, my doctor was forced to risk his job in order to treat me. He was the only orthopedic oncologist in my state and all of those bordering it. If he didn't treat me, then I'd simply die of my cancer. The hospital he worked at wouldn't allow him to treat me for free, so he had to sneak and do it. Because he determined that my cancer was actually terminal, I was able to appeal the initial S.S. opinion and have that appeal expedited. Because of this, it only took me TWO YEARS to get healthcare coverage through S.S. If that doctor hadn't treated me while I went through the process, I'd have died before even having a chance to appeal. In fact, that is what happens to many people. Even though they'd qualify, the process has been made so difficult, that they still die for lack of care. I was lucky/blessed/fortunate--call it what you will--because, by risking his career, the oncologist was able to change my cancer from terminal to simply incurable. When the alternative is death and you know that most people in your situation do die, having an incurable cancer doesn't sound half bad. However, is it really right to force a doctor to risk his entire career just to keep a patient alive? What about those who don't have doctors who could take that risk? Should they just die? I'd love to hear those who are trying to make this mandate a matter of religious belief explain to me why Jesus would rather people die than have the ability to get treatment.

Because the healthcare mandate stopped insurance companies from placing caps on care for people who were paying for comprehensive coverage and stopped them from refusing to provide care via the pre-existing conditions clauses, my nephew was able to get his treatments when he needed them. Childhood leukemia is very survivable nowadays. However, that doesn't matter if the children with the leukemia aren't able to receive these treatments because of how extremely expensive they are. My nephew was able to get care when his cancer was still curable. I wish that had been the case when I was in that position, but I'm glad that he'll now be able to live without this sword of Damocles that I'll have for the rest of my life.

Even with the mandate in place, it was a struggle for my nephew and my sister. After using all of her vacation time, she had to drive hours every day back and forth from the hospital to her job and back again. She had to have a family friend move in and care for her daughter during the process. She had to come out of pocket for all of that. The donations people gave helped so much and I appreciate it. I should add that of all of my friends who did contribute, not even one of them were folks who identify as Christians. But then, if I'd considered the Good Samaritan parable I'd have expected nothing different. I'm so grateful to all of those who choose to help others instead of sitting around being self-righteous and self-absorbed.

Friday, April 11, 2014

Sudden Death

Life can be so full of sorrow. I finally met a person of color in this area. We're both personal care attendants and met at a function for our clients. I was extremely excited, because this was the first person of color I'd met and had a conversation with since I moved out here in October. Then I found out he was also a person with disabilities, which made meeting him even more awesome.

We hung out a few times and it was nice to finally be around folks who I could relate to. He was originally from New Orleans and we had lots of laughs about things we remember about the city. He was raised a Roman Catholic and was looking for spiritual truths among the Black Hebrew Israelite movement. It was nice to be able to talk with him about the role of people of color within the Orthodox Church. I'd shown him my icons and talked to him about the important saints from Africa and he even posted them on his facebook page to show others.

Just an hour ago, I found out that he died on Tuesday night. I'm in shock. He was just 35 years old and he'd been doing so well on dialysis for two years and his doctors were talking about cutting it back to once a week because of how well he was doing. Then, on Tuesday he died of heart failure in his sleep. He worked 2 jobs and was the primary caretaker for his grandmother. His son is only 10 yrs. old. This is such a shock. I was JUST hanging out with him and laughing and talking and now he's dead.

Memory Eternal.

Thursday, April 10, 2014

Skepchick, Your Ableism Disgusts Me

I'm really, really furious about this Skepchick debacle. See, this kind of b.s. is exactly why I made a decision to stop showing support for white women. I raised as much of a ruckus as I could muster when the Rebecca Watson elevator issue started. I did what I could to talk about why it wasn't just someone overreacting to treatment that should have been viewed as flattering. I used my voice as best as I could to state how no one is entitled to make opportunistic advances on women nor are they entitled to tell us how we should feel about the treatment we receive.

However, what does Watson do now that OTHER marginalized people are talking about the highly problematic behavior on her site? Absolutely nothing. No, that's not quite right. It's actually worse than nothing, because they added more of the same ableism that was a problem in the first place. These white non-disabled women ditch the one person who could have helped them fixed the problem and then went out and found a wack ass assimilationist token PWD who is willing to lick their boots because they're being thrown a few scraps.

It ain't no accident that the folks doing this are white women. It ain't no accident that there are no angry PWD contributors allowed. It's like the token white woman on the MRA blogs who is only allowed to post because she can act as a foil when they are called woman-haters. It doesn't fool the majority of women just like Skepchick's blatant tokenism doesn't fool the majority of PWD. Skepchick is no different from the MRAs and religious zealots who double down when people rationally point out how they are engaging in oppressive and marginalizing behavior.

Gingerly Approaching Androgyny

I just posted a picture with a message that really resonated with me. I didn't want to take away from what it was about by turning it into something all about me, so I decided to write this separately.

My body is so different from what Western society says a woman is "supposed" to look like. It always has been. The oncology surgeries only intensified this. If I am only a woman because of my parts, what does it mean when those parts are removed or made completely unrecognizable from their original form?

I feel like I'm finally at a point in my life where I might be able to start safely exploring what it means to be a woman with an androgynous body. I don't know where this is going, but hopefully it will result with me being more comfortable with the form I have and able to see it as just as beautiful as those who look more like what many people in this society expect from a woman.