Sunday, July 20, 2014

Disabled Person Competes in Something, What Happens Next Is Completely Normal but Gives Society Misguided Hope.

We've all seen those "news" articles that talk about a disabled person "beating the odds" or whatever, and now with the ubiquity of social media, these things are going viral. Stop it, please, just stop it.

Inspiration porn is bad enough on its own.  If you're not sure what inspiration porn is, the quickest explanation is Scott Hamilton's ridiculous quote, "the only disability is a bad attitude". That quote has been plastered on so many pictures of disabled people doing normal things, and it sickens me. Stop trying to convince everyone that either people like me are not disabled or that our disabilities should motivate you for some logically impossible reason. "Oh, look at him, if he can live a normal life, why can't you?" First things first, no life is normal. Secondly, I am not your measuring stick; I'm not here for you to realize that you "need to be" like me, or better than me. In fact, if you aim to be better than me, please get as far away from me as you can before you reach your goal.

If I somehow invented my own adaptive equipment that let me play golf with one arm, go ahead, please spread the word of my invention, I hope it would help others as much as it would help me. However, don't act any different than you would act toward anyone else who would check a very minor item off of their bucket list.

That brings me to the clickbait bit. "Disabled person competes in sport, what happens next is heartwarming", no it's not, or it shouldn't be. If it is heartwarming at all, please ask yourself why. If it's heartwarming because the disabled person got to play, it's misguided. If it's heartwarming because out-of-the-ordinary things happened to flat-out let the disabled person make a play, it's misguided. If it brings about any thought that starts with "if they didn't give up...", then it's REALLY misguided. If it's a story of someone being "nice" to the PWD, it's probably grabbing attention for every wrong reason in the book.

You will find some disabled folks who intend to inspire people; by all means, let them inspire you, but don't believe for a second that that is a universal attitude. If I don't want to be patronized for trying to live my crippled life to the best of my ability, don't patronize me. To borrow from an old Nike ad, "I am not a role model." Also, yes, I use the word "crippled", don't tell me how to identify myself. To hammer the identity point home, suppose you offer to help me with something and I tell you once that I'm alright, I can see that you're just trying to help, but if you ask five times, you'll "self-identify" as "just trying to help", while I may identify you as an intrusive asshat. I may not want your help, but I won't tell you how to identify yourself, even if I identify you differently, please don't do that to me.

"Disabled man finishes writing blog post, inspires no one, and likes it that way"...I truly hope you're not inspired, but rather educated, and hopefully in agreement as well.

Thursday, February 13, 2014

The "Perks" of Being Accommodated

Some companies are actually very good at accommodating their employees. Many of us need these accommodations just to make employment necessary let alone a career. Sometimes though, the most necessary things can backfire.

I get picked up by Paratransit every morning and driven to work. Finally, things are almost going as they should be (after two months at my job), but there is still something that has bugged me since before I even started working. I knew it would happen, too. "Can you stay late?" No, no I can't. I have to be in that vehicle 5 minutes after it gets here or I missed my ride home, and they'll charge me for it, too. Not only that, but I actually have to leave at least fifteen minutes early every day, just because that's when they're "available" to pick me up. They also take me to work in the morning. This creates a bit of a problem. Basically, I get to work when I get there, and I leave when I leave. It's not necessarily the best way to look when I want to move up, how does this look for me?

No matter how hard I work, this hangs over me. It's not legal for this to figure into any decisions on me getting raises or promotions, but it still looks pretty bad, to say the least. My employer also created a position for me. Sounds awesome, right? It did to me, too, but then I found out how they created it. On one hand, I need my job, I like my job and I thank them for accommodating me. On the other hand, these accommodations slap me in the face to remind me that I still depend on them to have a job at all.

I need to shut my laptop down so I can wake up in a few hours, roll out of bed, boot it back up and go to work.

Tuesday, September 3, 2013

You Can't Fix Crazy

Ron White said "you can't fix stupid", but you can't fix crazy either. When I use the word "crazy", I never mean mental illness. Crazy isn't an illness, it's an attitude, and everybody needs a little crazy in their lives. It's that time that you set aside for yourself and people close to you to ignore everyone else and have fun.

Stay off Facebook, put the camera away, get your mind off of problems for a bit and just have fun. Of course your definition of "fun" depends a bit on your definition of "close". If you're young and single,  call up some good friends for a night out, or even a random road trip. If you're young and taken, plan a date. If you're a parent, do something crazy with your kids. Crazy does not mean "unsafe" though. If you can have fun, forget your worries for a while, and not get hurt doing it, you might just be a little crazy.

Social media is awesome, but it's in close competition with text messaging for the title of "least personal communication medium ever." I can respect that social media opens up new worlds for people who have verbal communication issues or anxiety issues, but it is rarely one-on-one, if it's ever one-on-one at all. The messages are private, but never exclusive. Chatting on Facebook can mean multiple simultaneous conversations. "The more, the merrier" is not always true, especially not foe me.

You can't show me you care about me by dropping me in a crowd. I can have fun, and they may all be great people, but if I can be replaced by anyone else in a heartbeat, how can I be sure whether you want me there or not? If I can't change your routine for a day, or at least jump in a conversation, I don't need to be there. You don't need a crowd around you to be crazy; it's possible alone, but it's sometimes best with just one good person, or a few good people around. I am here, I am crazy, but I am NOT here to impress anyone. If you can't handle my crazy alone, don't put your friends through it. Don't put *me* through it. If I don't matter to you, don't pawn me off on them and expect me to be my normal crazy self.

Take me off the grid. Give me a reason to ignore phone calls. Stay off the grid yourself when you're with me. Crazy doesn't get interrupted by a text-based message. If you can hear my voice, acknowledge the time I'm giving you and reciprocate. If you can see my face, that goes double. Be crazy, be yourself, and never put social media above face-to-face time.

If this is the first time I've seen you in months, don't start a movie, don't boot your laptop, and don't dare have a conversation with someone to which I can't contribute. Before social media, people had, if it's not on instagram, or if you didn't "check in", it didn't happen. Crazy doesn't mean feeling like you're not there in spirit when you're there in body. Crazy is making memories, not composing tweets or Facebook statuses. No amount of social media brainwashing will change that about me. Apparently talking to and spending time with someone without a need for wi-fi is crazy. You can't fix crazy, don't try it on me. 

Monday, August 26, 2013

Let's Stomp Out Curebie Syndrome

Yesterday, a cerebral palsy awareness page posted a picture of a green high-heeled shoe that said "let's stomp out cerebral palsy". When several people with CP, including myself, replied saying they don't want a cure and won't be "stomped out", we all got banned from the page. It turns out the page's administrator is a mother of two sons who have CP, but she doesn't have the disability herself. Every self-respecting mother out there wants the best for her kids...right?

That's true, often until the kids have disabilities; then they suddenly need to be cured to be themselves. Nobody, or very very few parents actually think to ask their disabled kids how *they* feel about being cured. If the disabled person wants the cure, that's fine, but don't generalize. My disability is part of who I am, and I am not the only one who lives that way. Honestly, I'm not even sure how a potential cure would work for me. My left side is smaller than my right side, that's difficult to fix. They would have to give me stem cells on steroids or something, and that thought scares me. No disrespect to the great Stan Lee, but this is about as conceivable as a radioactive spider biting me and allowing me to shoot webs from my wrists.

It is impossible to promote awareness of any disability or other illness when you silence people who have said disability or condition. I cannot sit back and watch a CP version of Autism Speaks take shape. If you're at all curious as to why I say that, please read this post.

I still don't know how I stopped short of accusing this page's administrator of advocating for genocide. There is no cure for CP, so that seems like the only other option to "stomp it out." There was a huge group of people in the 1930s and 1940s who advocated a "be normal or die" lifestyle. You've undoubtedly heard of them if you've taken any history class in your lifetime, they were called Nazis. I know that sounds evil and condescending, but if you were any of us, you might see it that way too, especially after being on the receiving end of the same condescending attitude and deliberate silencing.

I saw an "I'll do anything for my kids" attitude here. Most mothers would do that, but most mothers would also love their kids just as they are. When you try to change anything about who your child is, you are misguided. This woman has a completely different definition of "living with CP" than I do. She's not living with CP and I can't sit back and read that without screaming "YOUR KIDS ARE LIVING WITH CP, *YOU* ARE LIVING WITH *THEM*!" When I hear that "I'll do anything for my kids" bit come out of the mouth of a mother like this, the name that comes to mind immediately is George Hodgins. His mother would've done anything for him too, including deciding that his life should end and murdering him...and that's exactly what she did. It seems socially acceptable to say your kids need to be cured because you can't deal with their disabilities and therefore can't love them for who they truly are, and obviously,  this is a problem. If you don't have a disability yourself, please stop acting like an expert on what we face. You might get teased as "that crippled kid's mom", but imagine actually being the crippled kid. You haven't seen a tenth of what your kids may deal with on a daily basis, and if part of that involves being bullied in much the same way you are bullying people like me, you probably won't hear about it until it's too late.

Later in the day yesterday, I saw another image posted on the same page. This one was a green cerebral palsy awareness ribbon with text that said "proud parent of a child with cerebral palsy". Excuse me for pointing out the obvious, but if you want your kids' disabilities cured, you are not a proud parent. You are a parent who is apparently putting your own convenience above your children's lives, needs, and opinions about themselves. You can't have your brownie points and eat them too. If we as a society should stomp anything out, it is people who think we need to be cured because we make their lives inconvenient. Help me stomp out Curebie Syndrome.

Monday, August 19, 2013

Social Security...Not exactly social, nor secure

According to the Social Security Administration's website, if you are receiving SSI in 2013, as an individual, you'll receive $8529.32 in total payments for the year. That's just over $710 per month. If that is your only source of income, you are literally living by government-funded poverty. The Department of Health and Human Services and the U.S. Census Bureau have defined poverty based upon where you live. The poverty guideline lies between $11390 and $14350 for an individual, and then you add approximately $4000-5000 for each additional household member.

The government will contend that SSI stands for "SUPPLEMENTAL Security Income", which would indicate that there is other income to be had, except that you have to prove that you are unemployable just to qualify for SSI. If your state has Welfare Cash Assistance, it's likely that you have to apply for SSI as a condition of receiving it, and SSI will replace said assistance. So how are SSI recipients supposed to bridge the gap to the poverty line? And how horrible does it sound that somebody has to make more money just to break the poverty line? If you are on one of the SSA's programs because you are disabled, they say there's some amount of money you can make and still qualify (I believe it's around $14,000 per year), but your benefits get reduced based on your earned income.

At the base income of $8529.32 per year, you may not be able to pay for your own living expenses, and you may still have to depend on other welfare programs like Food Stamps, Medicaid, and Energy Assistance. Even if you receive all this assistance, the money from your SSI may not pay your mortgage or rent. So after all that, I have to ask, what makes you secure, and are you social? I'm sure the government intends "social" to mean "part of society" rather than "having fun", but I'm not sure either of those is possible anyway. If you can barely afford to leave your house for essential things, how well do you fit into "society"?

So why is it called Social Security if you're not fully involved in society, and you're not secure? It sounds to me like somebody had to come up with a better name than "Better Than Nothing Payments" or "Public Moocher Payments". Not everybody on government assistance is trying to defraud the system, some people need anything they can get, but the criminals are the reason it is difficult for people in legitimate need to get help. Social Security needs to find the meaning of its own name.

Sunday, June 2, 2013

Electronic Text Communication: One Of The Best and Worst Things To Happen To Society Ever.

From email to internet chatting in all forms to Facebook walls and SMS messaging, text communication is both amazing and amazingly evil. I am not intending this to extend to authors of any type, including bloggers. I  expect people to comment on my blog or my Facebook status; that may or may not be considered "conversation".

There are many people out there whose lives have been forever changed for the better by text-based communication. It has given many people, especially people with various disabilities, a chance to communicate their thoughts to the world and to form friendships that otherwise would not get off the ground. It lets business take place in very clear terms. Friendships and relationships can be formed where distance would otherwise be a factor; distance can still be a huge factor, but it doesn't have to be a deal breaker. Last but maybe least, it allows us to leave a message for friends and family and let them get back to us when it becomes convenient.

Convenience is the real double-edged sword here. What could be wrong with convenience? It's too convenient. It's so easy for people who don't think of you 364 days a year to leave a halfhearted "happy birthday" message via Facebook. It's easy to send a text message saying "we need to catch up" and then forget you even sent that message. Emails get lost in unbelievable amounts of spam. Even outside the world of text, I am inconvenient...for everyone. I don't drive, and it happens all too often that something comes up and I hear "well, I would come get you, but......" and then after that I'll get texts about what I missed. If I miss something simply because I can't make it, don't text me or even call me about how I "should've been there". If you really want me there, show it beforehand. 

A vast majority of the time, I don't like being the center of attention. The exception to this is a one-on-one hangout. If I have someone sitting in front of me, texts can wait. Since I often have to plan things days or weeks ahead, it means a lot to me when I do get out. Even at this point, "center of attention" goes too far, but if I'm sitting in the same room looking at you, give me the time. Don't sit there showing me you'd rather exchange impersonal and (literally) abbreviated bullshit with someone else 1 to 160 characters at a time. Speaking of abbreviated bullshit, if you think something is funny, laugh, don't just sit there with a straight face and say "LOL". If you have to step away, tell me "I'll be right back"; don't just say "BRB", and if say you'll "be right back", MEAN IT. I know things come up, some calls and texts need to be answered, but remember, I took the time and made the arrangements to come see you, that person who just texted you only took the time to punch a few keys. If you want to reply to them something like "with a friend, talk to you later"...fine, but then put the phone back in your pocket. In this situation, the recipient of that text is very likely to respond with just "K". People are even getting too lazy to type "OK", so they cut it in half. If one thing points to how impersonal texting is more than any other factor, this is it. 

The ability to mass-text is evil too. Getting a bunch of friends together can make for good times, but it can also make for the driest interaction ever. "The more the merrier" is a nice thought, but if you've ever been "partying" in a room or club that's so crowded you can't move, with so much noise you can't even think, you know there is a limit to it. There's a time to gather everyone and go to the club, there are times to just gather a handful of friends and have fun, and there are times when one-on-one is best. Even when you text just one person, it's more like two-on-two because there are machines in the middle taking at least some of the personality out of the message. This is true for calling, too, but the personality-killing machine is much less powerful when you use your voice. Text-based communication can start a friendship or a relationship, but when other options are available, I don't understand how anyone is perfectly happy reading computer-generated friendship all the time. Friendships are better measured in time you spend talking, or time you spend together, than the number of characters you typed. "Our friendship is gonna be a short one lol"....."K".

Thursday, May 23, 2013

Things Not to Say to any PWD Whether They're Using A Wheelchair or Not

I read this post about things not to say to a wheelchair user and I thought "a lot of these could easily apply to anyone with a disability", some of them have to be slightly altered but they definitely apply. I'm going to copy a couple of them because, well, they're just that damn appropriate (or I guess inappropriate in this case), but there are a few of my own here too. Similar phrases have been combined.

1. "What happened to you?" Especially when disabilities are visible, people will be curious, and that's fine, but don't act like you have a right to know everything about me and my disabilities after knowing me for all of a few minutes. If you want to know, be polite about it, and remember that it's not small talk for most of us. Also, if you ask someone who doesn't want to talk about it, respect that too.

2. "Is your significant other disabled too?" If you just met me, and I just said something about my girlfriend, that's likely the extent of what you'll hear about her. Asking a PWD if their significant other is also a PWD is like asking anyone at all if their mate is the same race or even what their sexual orientation is. We aren't excluded from "to each his/her own" just because we're disabled, even though there are people who think they can decide everything for us, regardless of our age, but that's a whole other matter.

3. "Good for you"/"You're amazing", etc. If you're calling me, or any of us "amazing" because we do something well "considering the circumstances", don't do it, just don't. All we're doing is living our lives to the best of our ability.

4. "Can I ask you a personal question?" We know what's coming next if we do give you permission to ask the personal question, and it's none of your business. If you do ask the question that I have in mind, you'll never hear the answer from me, and you'll never have a chance to find out in other ways, even if you want to. People have their preferences, we are not excluded from this just because we have disabilities, and we sure as hell don't have to be open books.

5. "You're not disabled/you don't look disabled". I've heard this a lot, and it drives me nuts. I've been living with two disabilities for my entire life and another chronic pain problem for the past two years. Don't tell me I'm not disabled, ever. It is never up to you to tell me when to "play it up" and when not to.

6. "Can't shouldn't be in your vocabulary". It can, it should, and it will be in mine. Everybody has limits, regardless of their ability or optimism levels. When I say I can't do something and you dispute that, you are insulting my intelligence, you are disrespecting me. Don't try it.

7. "Don't be such a freeloader"/ "you owe me". If you even attempt to believe that anybody with a disability doesn't want to be independent, you're sadly mistaken. Unfortunately, in many cases, the family of the disabled person is more guilty of this than anyone else. We all get discriminated against in the job market and most of us "aren't disabled enough" to collect anything from the government. Everything in the world costs money, and we have the same needs anyone else does. So many of us don't exactly have a choice in this matter. In some cases the lack of a choice is temporary, in other cases it's more permanent. We don't owe anyone for accommodating us. That's along the same vein as "you owe me for raising you". We're not in debt to family, friends, or society in general for anything. If any relationship is based on money, somebody's disability is the least of the problems.

8. "Don't like something? Change it." We don't have the option like most people do. We can't just "get up and do something". Sometimes we literally can't move due to lack of energy or the presence of extreme pain, other times it's an accessibility issue. If "changing it" involves transportation, transportation is expensive for me because I'm too far from a public bus to walk there and the service I have is overpriced. Access is different in different places, sometimes the "get out there and do something" option is simply not there. "If things get bad enough, you will" doesn't help your cause either, because the fact that something really needs to happen doesn't change that it might be impossible due to any number of factors including finances and accessibility.

9. "Act your age." We're often trying to do just that and, among many things, some of the other phrases on this list keep us from doing it. It's very hard for me to act my age when somebody is telling me where I can go, and when I can go there. Acting like $20 is a lot of money works for an 8-year-old but I haven't been 8 in almost 20 years, don't try it on me. Telling me who I can and can't see doesn't help my cause or yours, and neither does thanking someone for being my friend. It's hard for me to "act my age" when there's somebody hovering over me telling me exactly how to live.

10. "Let me help you."/"I hate watching you struggle"- These are often said while something is being taken out of our hands, literally. If we need help, we will ask. Please do not force your help on us, demean us for not accepting it, or even demean us when we do ask for help.

The list that inspired this post only gave 10 examples, but after reading all these,  some of you may be thinking that I don't have respect for a lot of people, but I really do, I respect people who respect me. That brings me to add a bonus item to my list:

11, "Change your attitude". Part of the explanation for this one goes along with #5, partially (and unfortunately) thanks to Scott Hamilton. His quote, "the only disability is a bad attitude" has been splattered all over the web with images of people with disabilities doing normal things. It's just wrong to assume that there are no limits and then to say that attitude is the only limitation. When you have a disability, you're often (if not always) expected to be the "happy, grateful cripple". We won't be happy all the time, we're human. We won't be grateful for things that make us feel nothing more than human.

Feel free to add via comments, but remember, I'm going for general things here that fit the title.