Posts Tagged ‘disability rights’

Those of you who’ve followed me for a while know that I am on the autism spectrum, and that I’ve had opportunities to speak about it a couple of times, including a widely-circulated video which I posted back in March. I was able to get my job partially because of my autism, and a lot of the work I do involves working with, accommodating, and advocating for people with disabilities in the workplace, including but certainly not limited to autism. I don’t go around everywhere broadcasting my diagnosis, but it does come up on occasion.

One of those recent occasions was for my organization’s newsletter. I was asked to write a short essay, about a page long, about having a disability, about the program that helped me get a job in my organization, and what that’s been like. That article was published recently, along with a couple of other testimonials, and it’s been getting around. A lot of people have been coming up to me and thanking me for being so open with my story.

Today, I got an email from someone in my organization who had read the article, and had contacted me asking for advice. His adult nephew had been diagnosed with autism a couple of years ago, well past the point where intervention can be at its most effective. And in the  years since his diagnosis, his life has not gotten easier. I won’t go into details, but it was heartbreaking to read the man’s email and to hear about his nephew’s suffering.

At the end of the email, he asked what could be done for his nephew, and if maybe the program that helped me get my job could help his nephew.

What do you say to something like that? What sort of comfort can you give when there’s already so much pain?

I don’t know if I ever meant to be an advocate for people with disabilities. But over time, that role has kind of been molded around me. A good part of this has been because of my job. As I said, I have to advocate for people with disabilities in the workplace. To that end, I’ve learned how to market to people who are able-bodied why they should hire more people with disabilities. I can tell them that people with disabilities have a much lower turnover rate than the general population, 8% compared to 45%, that getting them accommodations rarely gets anywhere near the $500 mark, and then back all that up by talking about my own satisfaction with my position, and how the only accommodation I’ve needed for my ASD was permission to listen to my iPod or audiobooks while doing certain tasks. I’ve also been asked to do essays, like I did for the newsletter, and the video I recorded back in March. And sometimes it just comes up, like when explaining how I got my internship in Germany (yeah, my ASD played a part in that), or using it to illustrate a point in conversation, or a hundred different scenarios.

One way or another, it seems like I was meant to be an advocate, especially at this point in my life, when I’m doing so well at work, living on my own, and even as a writer.

But as a giver of advice? I’m not sure I expected that. And I get why it’s happening. Autism is a scary diagnosis for anyone to get, as well as for the loved ones of those diagnosed. It’s a disorder that varies widely from person to person, it can never be cured, the cause is still unknown,* the number of people being diagnosed with it has grown exponentially with improved diagnostic tools. Depending on what traits are present or what other disorders are present with autism can also affect everything from therapy to school choices to possibilities in adulthood. And when the diagnosis is made in adulthood, as happened with the young man whose uncle emailed me, it can be a sort of terrifying that no horror story can tap into. With all that in mind, hearing from someone who not only has the same diagnosis, but is successful in the real world, can be a soothing balm for the mind and soul.

I just wish I had all the answers. Or that I was more confident in the answers I have to give.

But if I’m going to give any sort of advice, it’s that we shouldn’t deny or try to hide our diagnoses. We shouldn’t try to be “normal,” because normal doesn’t exist, especially not for us. We process the world so differently than everyone else, but that doesn’t mean we have to be ashamed or afraid. I’m able to succeed and do the things I do every day because I process differently. So embrace your different. It may be called a disability, but it can be an asset too. Some of the greatest innovators and creators the world has ever known have been on the spectrum. And once we learn to work with the issues we have, we can learn to become those great innovators and creators.

And don’t be afraid to look for or ask for help. Even if you’re diagnosed later in life, there’s still plenty of resources for you. Many states, including my beloved Ohio, have programs that offer help and direction for people with disabilities and families, whether they be children or well into adulthood. Many schools have or are adding programs to ensure the disabled can take full advantage of their educations. More and more employers are recognizing the importance of hiring people with disabilities, and what they can contribute. We’re not being left alone like a ship in a storm. There is help.

Living my life strong, no matter what my diagnosis is.

And it’s important to be open about your diagnosis, especially with your friends, family, coworkers and teachers. Keeping it a secret has never helped anyone get by. It’s better to be open, so that those around us are better equipped to work with us, and join us on our journey as we work our way through life. I know it’s scary, and you don’t want to be any different than anyone else. But remember, there’s no normal. We’re all different, and many of us wear it on our sleeves. Might as well display this different too, if only to make life a little easier.

I hope you find this helpful. I hope the man who emailed me today found my advice helpful. And if you or someone you know has autism, I hope that no matter what, you or your loved one is able to hold their head up high and know this: you are great the way you are.

*And if you’re about to comment saying some bull about vaccines, let me tell you a story, since anti-vaxxers seem to value testimony more rather than scientific consensus: my mother has told me a few times that I was different from the day I was born, well before I received my first vaccine. I was nothing like the baby books predicted I’d be, and it wasn’t until my younger sister was born that she saw any of that stuff. I trust her word, so that means vaccines had nothing to do with the way I am. And if you still insist that vaccines had something to do with the way I am, you may be calling my mother a liar, and them’s fighting words.

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Remember when I blogged about being on the autism spectrum back in late January? Well, that post got a lot of positive feedback, both on the blogospphere and on other social media, particularly Facebook. One of the people who responded well to the post was my college disabilities counselor, Enjie Hall, who I became Facebook friends with…I think after graduation? I can’t remember. It’s been a while. Anyway, she reached out to me after that post came out, and asked if I wouldn’t mind doing a short audio and/or video presentation for a much longer presentation she was doing at the university she works at now. The subject was “Living in and Past College with a Disability,” and since I’m doing so well in that subject, she’d thought I’d be a natural at it.

I agreed to the project, and produced a short YouTube video about my experiences. Okay, maybe “short” isn’t the best term: I was asked to do a five-minute video, and somehow I ended up making it thirteen minutes! But hey, can you really put down all that experience and advice into a five-minute video? I’m not so sure.

It only occurred to me after I made, edited, and uploaded the video that I realized I’d just done my first vlog! Yeah, a vlog. Blogs I’m used to. Vlogs are entirely something new to me. I don’t regularly watch them, unless they’re full of unconventional humor (holler at my boy Thomas Sanders!). But me vlog? I never thought that would be something I’d do. I mean, I’ve considered doing a video of me reading from selected sections of my books, but I’ve never actually done it. Not sure why, maybe just because I’ve only used YouTube a couple of times to make and post videos, and they haven’t exactly gotten a lot of views.

But I made a vlog, and it was actually very nice. And it made me feel good that I made it. I put a positive message into the video, and from what Enjie tells me (her presentation was this morning), the portion of the video she used was received very positively by the people at her presentation. Because of all that, I thought I’d share the video with you guys, and see if maybe you find it as uplifting as others found it at the presentation. Enjoy:

How was that? Do you have any thoughts on what I had to say? Let me know in the comments below.

And as for whether I’ll actually try to make more videos in the future…I don”t know. Anything’s possible. At least I know I can and they can turn out half-decent. We’ll see what the future holds.

Well, I got another post scheduled for Saturday, so keep an eye out for it, folks. Until next time, my Followers of Fear.

I do not tolerate negative language meant to denigrate a person because of their race, gender, orientation, or ability. So when I see someone using this sort of language flippantly or carelessly, I usually tend to avoid that person. If they’re a friend though, I’ll try to convince them not to use that language before I cut them off.

Last night I was forced to do just that. Someone I’m acquainted with at school was responding to people lamenting about Facebook buying some app or another. He thought it was hypocritical that they were complaining about it on Facebook and said they should reevaluate their lives (though he didn’t phrase it in such nice terms). Where I got upset was when he used the word “retard”. I’ve mentioned before that I have an autism spectrum disorder and I’d been called “retard” or “retarded” more than once by bullies because I didn’t understand certain social boundaries or conventions when I was younger. Not to mention that mental retardation (or intellectual disabilities, which seems to be the preferred term among medical professionals these days) is an actual medical condition, so using it as an insult hurts the people with actual mental retardation worse than it hurts the people having the insult hurled at them.

I asked my friend if he would not use that word because it has the potential to hurt people. He responded that he was using the word without negative connotations and that people should realize that (as if we’re mind-readers!). He also said he uses racial and other denigrating terms, including the N-word, and said he uses them without the negative connotations and that it’s my problem if I was insulted by it.

At that moment another friend of his, whom I’m acquainted with as well, joined the thread and started using the very same terms we’d just been discussing. At that point I decided to leave the conversation, unfriend the both of them, and go to bed (though not before coming up with an idea for a short story based on this experience). And it’s still on my mind, as this blog post makes evident.

The thing is, even if they think they’re not using the words with their negative connotations, it’s not so easy to disassociate a word or symbol from its negative meanings. Otherwise the swastika would still mean good luck and auspiciousness rather than Nazi Germany and the Holocaust as it does for many Westerners. And these sort of microaggressions can have terrible effects on the people being denigrated. If you’ve never heard the term “microaggression” before, there’s a great blog post on microaggressions that explains them in depth. If you don’t have the time to read it though, a microaggression is basically the everyday little forms of discrimination that minorities experience throughout their lives. An example is the continued use of saying “that’s so gay” as a way of saying something’s stupid. It is not only bringing down whatever is being called gay, but it is saying that there is something wrong with being gay in the first place. And while the basic definition of microaggressions means they are small, especially when compared to gay-bashings or other forms of assault and more obvious forms of discrimination, over time they can build up and cause stress, depression, or suicidal thoughts in the person being denigrated.

Personally I only ever use these sort of terms in stories in order to portray a character the way I want him or her to come across to an audience. Even then I hesitate to do it and seriously consider whether I should really use such negative terms and if there is another way to get across the full impression of the character. That’s why within all of Reborn City, a novel about gangs divided mostly on racial lines and with a white supremacist gang, you’ll only see one instance where I use the N-word and other racial terms (though I do have several characters call Zahara a “terrorist” in order to illustrate how ignorant and prejudiced the world of RC is against Muslims).

So when I see people using these sort of terms so flippantly, uncaring about the negative consequences of these words, I get pretty upset. These terms are attacks on people because they’re minorities, and because my former friends are white or deeply tanned and don’t receive discrimination for their skin color, gender, sexual orientation, or level of ability, they don’t necessarily realize the damage they’re doing by using these terms. And by calling the rest of us oversensitive for being upset that they’re using these words, they’re proving that they’re insensitive to the problems of others, not that we’re oversensitive.

So I finish this post urging people to really think about the terms they use. You’re not being cool or rebellious by using terms that bring down minorities. What you’re doing is hurting people and causing people to think you’re ignorant or bigoted. If you’re going to use them, use them in a way that won’t hurt anyone, such as using the N-word in Huckleberry Finn is used to illustrate the beliefs of that age towards African-Americans. Or these words can be used to fight discrimination: there is a growing body of literature, music and other media that uses these words to show how hurtful they are and possibly change the way people think. Slowly but surely, some people are changing the way that they think.

That is all for now. I hope my former friends learn that using these words has negative consequences. Especially the guy who actually happens to own an up-and-coming business. How many businesses have failed because of something the owner has done? I hope that doesn’t happen to him someday.