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 memories...now, 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.

Friday, May 17, 2013

"He Didn't Let His Disability Get In The Way"

When people say someone doesn't let their disability get in the way, it's nothing more than a backhanded compliment. Disabilities do get in the way and that will never change. When you praise me or anyone else for this, you're complimenting us for ignoring part of ourselves. Occasionally there will be a PWD who decides to train for and run a marathon, or do the Tough Mudder course, or some other potentially high-risk activity. If they do, congratulate them, but DON'T add anything like "considering the circumstances" or "for someone like you", etc. If I accomplish something and add a qualifier like that of my own free will, that's fine, but don't do it for me, I can speak for myself. Don't try to make my accomplishment less valid. Also, don't begin to think that if one PWD can do it, we all can. You will often, but not always find out that those of us who do things like this are limited in other aspects of life. We may have the occasional need to attempt to surpass our own limits, but if we aim to prove anything to anyone, it's to ourselves and no one else. Don't ask me to prove my disability doesn't affect me; instead, listen to me when I tell you how it does affect me and take it for the fact that it is. Proving truth in something I know to be a lie is impossible. When somebody asks you about your own abilities and you tell them what you can and can't do, you aren't asked to prove it, but for some reason I am, we all are.

I heard somebody on TV say "he didn't let his disability get in the way", and when I heard that, I thought of two comparisons immediately, but one of them sounded mean so I went with the other. It's a fact of life with a disability, it WILL get in the way. It's not weakness when it does. That's like somebody saying they didn't let their job get in the way of their life. There will be a time when anyone with a job will have to say "I can't do that today, I have to work." Nobody thinks twice when they hear that. They won't ask if you're avoiding them. If they ask you to play hookie, they'd better be joking. On the other hand, if I say I can't do something for disability reasons, the questions don't stop. "Have you even tried?" "Are you sure you can't do that?" Perhaps the worst part is that those italicized words always bring a condescending tone. Sometimes I don't need to try, I can just watch someone else do something and plainly see that it won't bode well for me. The main difference between the job scenario and disability life is that it's ill-advised to quit your job, but it's impossible to quit having a disability. Yes, this is my disability "getting in the way", and there are only so many adaptations I can make. There's only so much we can do, and that limit is different for everyone.

Disability-related problems are never one-sided though. The other side of this one is when we do try not to let our disabilities get in the way, and someone sees that they do. The response that follows is usually something like "I can't stand watching you struggle, just ask for help". I will ask for help, but please don't forcefully provide it before I ask; feel free to offer but don't insist. It might also do you well to understand that when I do ask for help, it's often because my disability is getting in the way. That is definitely not the time to tell me not to let my disability affect me; that basically equates to throwing my disability in my face. Standing back and providing encouragement doesn't qualify as help either. "You can do it" won't help anyone of any ability level, except maybe with self-esteem. Thanks for believing in me, but I'm asking for your help because I need it.

It's impossible to live up both ends of a double-standard. If you want to offer help, do it just the same way you would for somebody without disabilities. Don't react harshly to me accepting or denying your help. Disabilities get in the way, so don't make me or anyone else feel like less of a person when they do. Do us all a favor, when disabilities get in the way, please, let them, and let us let them get in the way. Maybe we're trying to learn new skills. If help is needed, believe me, most of us will ask for it. There is a very fine line between me trying not to let my own disability get to me and you watching me "struggle". It is a fine line, but it's just as easy to know when you're close to crossing it; all you have to do is ask me and respect my answer.

Monday, May 13, 2013

Do People Just "Deal With" Me?

On Sunday, Mothers' Day, I went to visit a long-time family friend and former teacher. She is a retired special education teacher who has basically become a second mom to me (hence, the Mothers' Day visit). At one point during the visit, she showed me a gift she bought for her friend's three-year-old autistic daughter. The gift was a hat that read "Autism Awareness" and had interlocking puzzle pieces on it, similar to this one, but not exactly the same.

This led to a bit of an argument between us. I know Autism Speaks "supports the families" of autistic people much more than they support the autistic individuals, and I explained this to her. Her response to this was that the family needs the money to "deal with" the autistic child(ren). I'm paraphrasing her, except for the quoted phrase, which honestly bugged the hell out of me.

I'm not autistic, but I am a cripple. I can understand assisting the family, especially financially, only until the autistic individual or other PWD reaches an age that for others without disabilities would be considered "adulthood" or "maturity". During the argument, I suggested age sixteen, but that seems very random when every case is different. To explain it a bit, I suggested sixteen because that is when the average non-disabled teen would start driving, and when their parents would likely say "if you want to drive, get a job." A teen getting a job implies they have to be trusted with the money they earn. My friend's response to trusting a sixteen-year-old autistic individual with their own finances was essentially that these individuals may not be able to manage their money well enough, which may or may not be true depending on the individual. However, it took everything I had at this point to keep myself from screaming "THEN LET THEM FAIL!". To be clear, I don't want autistic people to fail at being independent, but you have to open up to the possibility of failure to give them a chance to be independent.

She argued that "some autistic people can't speak". Just because they are nonverbal doesn't mean they can't communicate. There's a huge difference there. I was surprised by the fact that a former special education teacher does not know about AAC devices and text-to-speech programs.  In the past two years or so, I've seen stories about some very successful nonverbal autistics "finding communication". Carly Fleischmann has been featured in the news explaining how she's been able to express her thoughts clearly with the help of technology. I've also just finished watching Wretches & Jabberers which I will defer to their own website to summarize.

I'm 27, and I still live with my mom because I've been having trouble finding work partially due to my disability and partially due to my location and other factors. I have cerebral palsy and I've been diagnosed with osteoarthritis, and I don't currently receive any financial "benefits" Apart from college tuition assistance which went directly to the university and three months of Social Security Survivor's benefits after my father passed away when I was 18, I haven't received any financial help. When I have applied for federal or state government assistance, I've been denied with the exception of Medicaid, but that's not directly financial. The survivor's benefit totaled about $4000, and my mother took two-thirds of it from me. I wasn't the best at saving what remained in my hands, but there are reasons for this. First, I was 18 years old and was just handed $1300. Secondly, I would be going away to college soon and would be "free" for the first time in my life, and that was cause for celebration for me. I failed, just as I say young autistic adults should have the opportunity to do. This amount of money wasn't enough for me to jump and decide to live on my own, but it wasn't exactly pocket change either. That was a lesson for me, and the only one I needed. I failed, but I was allowed to fail at a young enough age where I had a safety net. If you don't trust somebody with money until they're 30, they might fail and end up living on the street. If I would receive any sort of financial "benefit" in the future, I need it to be in my name and FOR ME. I say that because there is a constant air of "you owe me for taking care of you" around me. If that money went to my mother to "help the family", as Autism Speaks does, it would perpetuate the situation I'm in physically and mentally, as well as perpetuating the idea that I will never be an adult because I don't have my own money.

You cannot teach the value of a dollar at any age by handing someone a $5 bill and saying "spend it wisely". $5 won't get you much of anything today. The only way to teach somebody how to be independent with money is to put all the money in their hands, not to give the money to the family to help them "deal with" their "child". I realize that parents of children with any disability need assistance to support their child(ren), but it should never be up to the parents or up to a third-party organization to determine when a child isn't a child anymore. This is why the thought of owing my mother for "dealing with me" sickens me. I haven't had the resources to be independent yet, but when they come to me, they will come to ME, and that's the way it has to be. I've started to wonder whether almost everyone in any aspect of my life is just "dealing with me". A few people, including my girlfriend and a couple close friends have told me explicitly that they aren't just "dealing with me", but it seems everyone else is, and I need to become independent to break that cycle. Autistic people need that independence, too, and taking financial support away from me or any of them is counterproductive. If society would allow people with disabilities to be independent, maybe nobody would be "dealing with" us anymore and they can start respecting all of us as individuals.

Wednesday, May 1, 2013

Having Disabilities is a Full-Time Job

Apparently the fact that I have disabilities is enough to make the world believe I'm a magician. The words "disability" and "disappear" may begin with the same four letters, but that should be where the list of connections ends; unfortunately, it isn't nearly the end. People tell me all the time to hide my disabilities, but my cerebral palsy, vision impairment, osteoarthritis, and adjustment disorder are things that I cannot hide. If I try to hide them, and they "appear", I would undoubtedly have trouble explaining exactly what is happening to me in the heat of a moment like that. These same people also seem to think that "receiving" my bachelor's degree has made my options limitless. As a side note, I did more than "receive" my degree, I EARNED it, and even that may be an understatement; I had to fight for it. The assumption that I have no limits could not be further from the truth. They all forget, conveniently or not, that my disabilities are still with me and always will be. I can work through the adjustment disorder, but the others will never go away.

I wonder how long it will (or more likely won't) be before the next person wants me to make my disabilities disappear. At the same time, I wonder how long it will be before people realize that disabilities do not have off switches. I also wonder when people will ask me to act like a crippled old man again. If I apply for a job, I always hear "don't tell them about your disability" but if I apply for government assistance of any type, I get told to "play it up". It definitely does not work that way. If I would choose to hide my disabilities from a potential employer, I could get denied accommodations that I may desperately need. The other extreme is probably more detrimental to me. If I would "play up" my disabilities to the government to get what they call "benefits", I could possibly be arrested for either fraud or perjury. Nothing is worth putting a felony on my record. If I'm not willing to take a felony charge myself, you have no chance of getting me to do that for your benefit.

Maybe that would explain why things like Social Security are called "benefits", anybody in the applicant's life tries to benefit without doing anything. Yes, if they're employed, they pay into this system, but maybe that's why it's a benefit to them. To me, it would be a life changer, a shot at independence, and ironically, a shot at getting off that system and into the working world. I just happen to live in an area that has nothing to offer me. I need the means to move to find a job, but I need a job or financial assistance to get that. Government assistance is called assistance for a reason, and truthfully, assistance is what I need. My goal is to work a full-time job, but without an opportunity, that will never happen. Stay-at-home moms say that's a full-time job, and it is, as is being a college student. Having a disability is a full-time job too, but it's like slave labor, it's not volunteer work but it doesn't pay. I can already hear you saying "it doesn't pay? then what's the disability benefit?" Stop using the word "benefit", for one thing. It's not a benefit, it's a lifeline. Secondly, this is a 168 hour per week job without holidays. That's right, My disabilities don't clock out. My disabilities don't give me a day off, ever. If they don't give ME a day off, you damn sure don't get a day to tell me how I'm affected. You don't get to tell me when I'm normal, when I'm me, or when I'm a complete cripple. I'm the one that tells you, the government, or a potential employer what my limits are today, tomorrow, or any day until I'm dead. That's right, I said "limits". My options are not limitless, even with my degree in hand. My disabilities don't shift gears and become more or less severe when somebody wants them to, not even when I'm that somebody. They shift gears on their own, and there is no neutral. The only reverse involves me saying "I'm in too much pain" and backing up into my bed. Three of my four disabilities are incurable, and people acting like I can be cured overnight makes me incorrigible. Everybody in my life needs to know I have disabilities, and the only person who should be using these disabilities to judge me is...well....a judge, the social security appeals judge. I don't judge myself based on my disabilities and I'm the one who sets that example, or I would be setting the example if people actually followed it. It's such a struggle to get the critics to follow it. I've graduated college, I'm done being graded, but I'm not done with being disabled, and I'll never be done with that.

I don't have the benefit of tailoring the levels of my disabilities to fit the situation, and you don't either. If I don't have to address you as "your honor"...in the appeal hearing, you don't have the authority to judge how disabled I am. I'm not lazy, I have limits. Education doesn't make the limits disappear. The only things that can possibly make my disabilities easier for everyone to handle are proper accessibility and acceptance. Of course, it's most important that things are easier for me, or for any other person out there who has disabilities. Another aspect of acceptance is accepting that I'm the authority on my own life. Don't set expectations for me. I don't care to meet them, and I don't care if you're disappointed. All I'm out to do is live and enjoy my own life my way, and my way doesn't involve denying who I am. Being who I am doesn't involve being Supercripple or a poster child either. We are not here to make things easier for everyone else and we aren't asking for "too easy". All I'm asking for is accept me for who I am and keep the playing field level. Real acceptance is shown, not just spoken. I may not have control over accessibility issues. I will try to make people accept me for who I am, but I can only try so hard. I just hope one of those people who accepts me has a business behind them and can offer me the opportunity that I need. Of course, the ultimate goal is not just to get these opportunities and acceptance for myself, but to do that for everyone out there who has a disability. Having a disability is a full-time job, but it shouldn't keep me or anyone like me from getting a real full-time job and living a full life.

Thursday, April 11, 2013

If a tree falls in the forest...

...And no one is there to hear it, does it make a sound? This is a question that generations of people have asked, and there has never been a definitive answer. I'm not looking for the answer, I would rather update the question for the twenty-first century. If I share a post on Facebook, and nobody takes the time to read it, does my opinion matter?

Anybody with an Internet-connected computer, smartphone, or tablet can be a blogger. There could be half a billion bloggers just in the English-speaking world. Even Twitter is considered blogging, albeit "microblogging".

If Tumblr is your blogging site of choice, you will see a lot of posts pertaining to various facets of social justice. You'll see everything from race equality posts to feminist posts to disability equality and GLBTQ equality support and many more "hot button topics". The "issue" with Tumblr, for lack of a better way to say it, is that these posts are strewn between posts about TV shows and pictures that contain random quotes which people re-post either because they can relate or purely because they laughed at them. There are also too many "guilt trip" posts. We've all seen them, and we're all probably "going to hell" because of that one post we chose to ignore rather than reblog, or that one we chose not to share on Facebook. I'd rather just use my own judgment when I decide whether to like or share a post on either site. If I like it, I'll "like" it too. Because people subscribe to the false sentiments in posts like this, blogs and Facebook pages are filled with them, but then the posts that are intended to start legitimate discussions or spread a thought-provoking message are obscured.

If you'd rather write where your opinion can be taken more seriously (because it's not appearing between a post about Anime and a Futurama Fry meme image), you can come to a site like Blogger or Wordpress. The catch here is that these sites don't have the reach that Facebook, Tumblr and Twitter do. As of July 15, 2009, Facebook had 250 million users. In just over three years, that number quadrupled. In October, 2012, Facebook hit 1 billion users. Twitter has about half as many users as Facebook, and Tumblr only has about 170 million users. That site also says that Wordpress has 74 million blogs. Google chooses not to disclose how many Blogger users there are. I could find followers quickly on Twitter, but 140 characters does not serve the purpose. If I wanted to write this on Twitter, I would hit the character limit before I got halfway through the first paragraph. Ignoring the subject of this post, a tweet that hit the character limit would read "...And no one is there to hear it, does it make a sound? This is a question that generations of people have asked, and there has never been ". Even if I had 500 followers on Twitter, I'd have 500 people telling me that tweet is nonsensical and a waste of time.

My best bet is to finish writing this, share it on my Facebook page, and then just hope it doesn't get lost in random status updates and guilt trip posts. There is always the chance that the exact opposite would happen.   Maybe I have caught someone's eye; maybe someone out there likes my ideas enough to take them further than the web. Just like running for office or getting a job, I would need to know the right people. I don't have many connections like that; if I'm lucky, I can use the theory of six degrees of separation and it reaches someone who has the means to help me take it to a wider audience. It would be nice to become famous because of a blog post, but fame would be just a bonus. I would rather see my thoughts have a positive effect on a community. I'm just one of over a billion people on Facebook, and I'm an even smaller drop in the bucket that is the whole of the world wide web. I can track how many people "like" or share a post after I link to it on Facebook, but maybe I made them feel guilty. Maybe they shared my post to add their counterpoint. Maybe you've had an epiphany while reading this but you've forgotten about it because I rambled.

I'm not specifically on a mission for fame, but on the other hand, I'm tired of being just a drop in the bucket. There has to be some middle ground somewhere. I want to be an activist, not just some guy with random ideas and a computer. I want people to see that this isn't just me telling people that the world owes me a better life. The world doesn't "owe" me, but I could use the help. That is why I write what I write. Maybe somebody will read it. Maybe they can help me, or maybe they are in the same situation or a very similar one. I need an opportunity, but I'm not the only one. Maybe this isn't the post that brings the publicity I'm looking for, but then again, maybe it will bring publicity to my future or past blog entries. All that being said, there's not much left to do but ask again, maybe a bit differently this time: if I share a post on Facebook, even if all my friends take the time to read it, does my opinion matter? I can only hope I'm making a twenty-first century "sound".

Friday, March 1, 2013

Live Inexpensively or Die

Originally posted on April 7, 2012 by disabilityrightnow

by Clint Berger

Early news stories about George Hodgins’ murder stated the “views” of his mother about the services that were available to help George and people like him, or the alleged lack of them. That statement was later refuted. George Hodgins had been involved in at least one organization that provided him both the help he needed and social interaction in his community. His mother took this away from him, saying that she wanted to find something better for him, but she did not see this through. She instead decided to take his life and her own.

George was affiliated with the Morgan Autism Center in San Jose, California. He was there for schooling and to learn life skills. His mother pulled him out of this program, but did not actively pursue other opportunities for him as she said she would. A representative of the Center stated that they had services available for adults as well as for children. George would have been eligible for adult services at age 22. Instead of letting him continue working with the Morgan Autism Center, Elizabeth Hodgins had something else in mind. George would have learned to be more independent, and he could have made friends and become more active in his community. The opportunity for a full life was stolen from him, and then life itself was stolen as well.

Elizabeth Hodgins used a supposed lack of services for her son as “justification” for murder. To say that this is wrong is a gross understatement. Some of us legitimately do not have services available and we are still alive. Often, the “burden” of raising a disabled child is heavily financial. This is likely one of Elizabeth’s possible motives for George’s murder. We will never find out the true cause of his murder, but it is possible that the monetary costs of caring for George were a factor in her twisted thought process. We will never get the truth, nor will we know the truth of what happened to any of the others whose names were read at the vigils. Since the vigils, more of us have been murdered, and with each of these murders, we all wonder when our voices will be heard.

Money can be tight for families of people with disabilities, but it can be used to control and abuse us; this is a concept and a lifestyle that is very familiar to me. Every day of my life, I get constant reminders of how much it costs for everything from the electric bill to my student loans. I am not on any federal or state assistance, and I am unemployed. I have a caseworker assigned to me who is supposed to be providing services similar to those available to George, but my calls are not returned. My needs are not treated as needs, and I am told I live too far from public transportation to be able to use paratransit. I essentially have nothing available to me right now; and that is why it is so upsetting that someone would lie about their child’s potential to evoke sympathy for themselves. George was working with the Morgan Center, and there are no accounts that justify his mother’s assertion that he was not receiving proper support there.

George’s case brings so many questions for anyone with disabilities. The question at the top of this list is something to the effect of, “How long will they let me live before my life is taken?”, but this is not the only question we have. The next question we all ask ourselves is “how will I be independent?”. We all struggle to be as independent as possible, but many of the government and nonprofit agencies that are established to help people with disabilities are actually geared toward helping their families instead. They are supposed to be helping us, but even they overlook us. George needed help. He needed to remove himself from the family that was supposed to be helping him. Even the director of the Morgan Center, Jennifer Sullivan, expressed sympathy for George’s family on her blog for the center. Yes, there are other family members mourning George’s untimely death and his mother’s suicide, but they likely don’t see Elizabeth as a murderer either. There comes a time when the focus needs to change. Start supporting people with disabilities directly. The families need support, I cannot deny that, but the best support for the family is education. Teach parents how to care for their children without controlling them, especially as they reach adulthood.

Many of the services and donations to these families are not directly monetary, but money is the key, everything that is needed and provided has a price tag on it. Most parents of children and adults with disabilities seem to ask, at some point, “when will my son or daughter be independent?”.The answer is that your loved one will be independent when services are properly administered, when the money meant for them is actually in their hands, and when they are treated like human beings and not like burdens on their families and society. Until we have money in our own pockets, we will not be seen as “productive members of society” and our opinions about our own lives will continue to be ignored. When the money intended to help us is controlled by our parents and caregivers, it allows and encourages them to control, abuse, and even murder us. We have dreams of independence beyond removing the “burdens”, but we also have voices that need to be heard. George’s voice can no longer be heard, but mine can and will be, as will those of my colleagues. We are more than a line in a budget, we are human. Focusing on the families is another way to talk about us without us. I urge everyone out there who wants to help people with disabilities to focus on us, to let the help trickle down to our families. Help them by seeing our potential and helping us fulfill it.

If, after reading about George here and reading my own take on this aspect of our lives, you still question the idea that the focus is not on us, you need look no further than Youtube. The videos below are rather lengthy, but they do well to help me show that we as people with disabilities are not the priority in our own lives, even when people and organizations say they are trying to help us. These two videos depict a PowerPoint slideshow that gives statistics relating to the social, economic, and emotional impacts children with disabilities have on their families, such as the costs of care and time spent to care for these children. The parents in attendance are then given the opportunity to respond and tell personal stories. Many of these stories involve the parents explaining how they cannot go out to dinner, or take a family trip to the zoo like a “normal” family. The emphasis is on being a normal family, not on allowing the disabled children to live full happy lives, as it should be. Emphasizing the impact on the families and showing sympathy for parents and caregivers is enabling these families in their effort to control every aspect of their children’s lives, including, in cases like that of George Hodgins, when these lives are to end. Something is blatantly missing from these videos; that is the input from the children who live with the disabilities. If you wish to help us, start by listening to us.

Thursday, February 28, 2013

Every time I see an Autism Speaks commercial, a little piece of my head explodes

(Originally posted on my tumblr account on April 9, 2012)

I am not autistic, but as a PWD, I see the commercials and the complete avoidance of the people (most often children) who are actually autistic. Most notable is the Tommy Hilfiger ad, where he says “I’m Tommy Hilfiger, and my family is affected by autism.”

He doesn’t even mention which member of his family is autistic like the others do. If they wanted to advertise and actually acknowledge the autistic people, they should let them star in the commercials (or at least give the opportunity to do so). If they completely reversed their strategy, they might be a slightly better organization. Of course, the true solution is to fund research more than these ridiculous commercials, the organization might be more credible that way. What they need to do is get someone like this “nameless” autistic member of Hilfiger’s family to star in the commercial….let them communicate “I am autistic and this is how it affects me: …”(I’m choosing not to be specific here because I don’t want to mislead or offend anyone). Only after they have done that should they even consider having a famous person jump in and tell you who they are and that it’s their child ACTUALLY IN THE COMMERCIAL.

I’m not autistic, as I said, but avoidance of PWDs and the whole “focus on the family” idea just drive me insane. Focusing on families means giving the parents and caregivers the aid that should actually be directly in the hands of the PWDs who need it. Focusing on the families means giving those parents and caregivers the opportunity to control and abuse us. It’s more than opportunity though, it’s somewhere between an opportunity and a command. All disability-related organizations need to realize that donating to the families will not help us, it will kill us. If the money, equipment, or services are in the hands of the PWDs, it will make independence more possible for us. If you donate to organizations like Autism Speaks, all you’re essentially doing is making yourself feel good while perpetuating many negative stereotypes, including the one that says PWDs can’t be independent.

Tuesday, February 26, 2013

Both Teams Win? Not So Much

There's a video going around of a teen with an intellectual disability scoring a basket in his high school basketball game. His name is Mitchell Marcus, and he had served as the team's manager for most of the season. The coach decided to put Mitchell in to play near the end of the team's last game. There are so many problems with this, but it really comes down to one thing, Marcus is just trying to live life to the best of his own ability. He's not here to inspire anyone. The coach, however, does not understand this. In his interview, the coach said he was prepared to lose the game "for his moment." Their team won, but not before a player on the opposing team blatantly passed the ball to Marcus so he could make a basket. That's not basketball. That's not how you play sports. You play to help your own team win.

When Marcus was interviewed, he (apparently) said he was just happy to wear the uniform, even though that came from the mouth of the reporter, not Marcus himself. That should be true of any athlete at any level. If you're not proud to wear the uniform you are wearing, you either stop playing, or in the professional ranks, request a trade. In any case, they called these events "sportsmanship". This is not sportsmanship, this is patronizing. Was Mitchell Marcus happy to play in the game? He was. Was he happy to score the basket? Again, it's fairly obvious he was. Did anybody bother to ask him about HOW he scored that basket? Not at all. Any other player on any other team would be disappointed in themselves missing so many opportunities before that shot, and it's fair to assume that he is no different. That's right, I said it, he is no different. He joined the team, albeit as the manager, to be a member of the team, and probably to make some friends. If he is aware that he would have trouble keeping up with the competition, he wouldn't want to play just to be left in everyone's dust. Would people applaud him for knowing his own limits? I don't think so, but they shouldn't. Nobody asked him about his opponent who blatantly ignored basic basketball strategy. You don't want to pass the ball to an opponent. No exceptions. If he has the basketball knowledge the coach referred to, he would know how patronizing it would be to have these events unfold as they did and to be the unwitting center of it all. I have no doubt that Mitchell Marcus was happy, but I also have no doubt that he was not intending to inspire anyone. He was just trying to be a normal teen, be involved in his favorite sport (even if he couldn't play), and make a few friends, and there is nothing wrong with that. What's "wrong" with the situation is all the TV cameras and the opposing player doing what he did. I wonder whether or not this video would have gone viral if any one factor changed. If Marcus was not disabled, the opposing player is immediately ostracized. If he had made one of the shots he took under normal basketball circumstances, is this "news"?

It's almost as if the news story isn't about Mitchell Marcus at all....until people want to say how inspiring he is. The story is about all the well-intentioned, yet misguided people around him who literally set the stage for him. They all want to show how "nice" they're being to the disabled kid. They want the glory of being kind people, but when disabled people see this, it has the opposite effect. If you want to be kind to anybody who has any sort of disability, don't patronize them like this. Don't act as if "in his mind, the championship is on the line" when in reality it's not, and don't act like that staged basket won this "championship."

There was a similar situation back in 2006 which involved an autistic high school senior named Jason McElwain. His story gained nationwide notoriety when it aired on ESPN, and some things were still taken too far. Some media outlets even labeled him as a "high functioning" autistic which is problematic on another level that I won't discuss here. However, in McElwain's case, he scored all his baskets during the regular course of the game and under normal circumstances. He scored twenty points in four minutes on the court, including 6 three-pointers.  A streak like that will reach the media even if the player has no disabilities. He made himself newsworthy by playing well, not by other people setting him up, and not for simply living life to the best of his ability while having a disability.

People without disabilities aren't in the news for daily activities at any age, so why is Mitchell Marcus' story different? It's different because people want to make a big deal about being "nice" to someone who has a disability. It's different because people are wrongfully inspired by things like this. It's different because the majority of people don't see how patronizing it is. Nobody wants to acknowledge that this should not be different at all. That is, nobody without disabilities wants to acknowledge this. The disability community would like to see "news" like this disappear, and I agree with this sentiment. We are not here to inspire anyone except ourselves. We don't want fame and glory for living our lives, and especially not for staged acts of kindness and "sportsmanship". Nobody should be exalted for respecting us. Even the opposing player who threw Marcus the ball said "I was raised to treat others how you want to be treated". This is not how to do that, unless he wants to be inspiring in the way that the disability community abhors. We're not inspirational people, we're just people, and we deserve respect just like everyone else does.

Saturday, February 2, 2013

I'm 26, and I'm Tired Too...

Inspired by/response to I'm Tired, by Robert A. Hall, mistakenly attributed to Bill Cosby. 

I'm tired too. I have cerebral palsy and chronic pain caused by osteoarthritis. I just received my college degree after eight years of fighting with the university. I've been trying for at least the last four years to find work without so much as a callback for an interview. I'm tired of the cycle of "I can't get work because I have no experience, and I can't get experience because I can't get work." I'm tired of people calling me lazy for it. I'm tired of being denied benefits because people without disabilities tell me that I am not disabled either, especially after living my entire life and having my disability affect me several times a day.

I'm tired of disability benefits being called "benefits". It's not a benefit, it's a necessity for people like me (and I can't get it). I'm tired of people telling me what I can and cannot do, or what I should and should not do. Everybody says "just go get a job", but if it was that easy, none of this would be an issue. I'm tired of hearing that going to college means I'm not disabled. I'm tired of people telling me I'm attempting to take advantage of the system that was put in place for people like me. I'm tired of being denied government help, tired of lawyers telling me I have no case against the government. I'm tired of dealing with employment agencies that only exist because discrimination is constant, even though the government and these agencies will never admit it. I'm tired of getting criticized for not responding to people fast enough, tired of calling people to make sure they are doing their jobs, and tired of being an option for these people when society makes them a necessity for me. 

I'm tired of people coming to me to complain about their jobs when I don't have one. I don't mean everyone, if you're being harassed or if working conditions are subpar, those complaints are valid, but "I hate working 9 to 5" will draw nothing more than "give me your job, I need it" out of me. I'm tired of hearing about the bad state of the economy when people like this have jobs. I'm tired of people questioning a work ethic that I haven't even had the opportunity to show. "Make an effort", "be more motivated", "change your attitude", I'm sick of all this. I'm tired of people telling me to contribute to society when I can't even get out on my own. 

I'm tired of people telling me when I'm disabled and when I'm not. Maybe things like Medicaid and Social Security payments are called "benefits" because it's become obvious that people take advantage of them. I'm tired of people who reach for their Medicaid card and have an iPhone fall out of their pocket; people seem to think I'd use the payments the same way, but there is zero chance of that. I'm tired of people determining my needs based on my family's income. People need to stop believing I can be treated like a child my whole life, I'm already too old for that. 

I'm tired of telling people all this stuff, tired of them not understanding me and THEN criticizing me. I'm tired, but as long as people lump me in with those who deserve the criticism, I can't give up. Now I'm just tired too, I have to stop here and hope the message is clear.

Monday, January 28, 2013

I Can't, A Polarizing Phrase

                I’m 25 years old, and I can’t tie my own shoes. It’s not because I never learned, or because I haven’t tried; It’s because I have hemiplegic cerebral palsy. It never fails, when someone without a disability sees someone with a disability struggling with something and giving up, they will likely say something to the effect of “try harder” and the person with the disability is likely to say “I can’t do that”. When someone like me says “I can’t”, no doubt, someone will say “you can do anything you put your mind to.” People have tried to teach me to tie my shoes ever since, as well as other similar mundane-seeming tasks that require two hands. The calls of “try harder” or “don’t give up” never cease. Sometimes it’s best to be the bigger person, to admit when you need help. That doesn’t mean people with disabilities should feel defeated, it just means we know our limitations.

                Perhaps the worst thing about these people with the “everything is possible” attitude is the moment when they finally realize that they were wrong. They will still try to motivate us to no avail, but then they will also begin to tell us that we can’t do something. It can be simple everyday things like “you can’t lift that box” or something as big as “you can’t be a parent.” Either way, they are attempting to use motivation as a form of control. If they wanted to make their point in one sentence, it would be “You CAN’T be independent.” Part of independence is knowing when to ask for help.

As I’m writing this, there is an infomercial on TV for the “Insanity” workout, similar to P90X but it’s a 60-day program. This is a perfect example. I can’t do this workout. Try to motivate me all you want, I don’t have the physical capacity or ability to do these exercises and I know I’m not alone. I know people with disabilities are not the target audience here, but it does help me explain how people push us past limits that they don’t acknowledge in the first place until it is convenient for them to do so. People tell me all the time “just push yourself a little more every time; you’ll eventually be able to walk ten miles.” How do you know I will be able to do that? Do you know how my body works? Do you understand the pain I feel from living with osteoarthritis every day? Most likely, the people who say things like this have absolutely no idea what my limits are, nor will they know the limitations of anyone with disabilities.

                Saying “I can’t” is not admitting defeat, it’s not admitting weakness, it’s admitting a natural limitation and being logical. When someone without a disability says they can’t do something, provided they are over the age of, say, ten, people will believe them. People without disabilities are allowed to have limitations but we are not, apparently. We have to be the extremely optimistic, inspirational story for everyone to gawk at and say “look at them, they didn’t give up, you shouldn’t either.” I am not that guy. Don’t look at me and say that I never gave up, because I have. I say “I can’t”, and that phrase will never leave my vocabulary like some people believe it should. What I encourage is that we try, and that we realize when something is impossible or when we need help to accomplish something. I do encourage everyone to try to exceed their limitations, but to do so safely. I encourage you to stand up and say “I can’t” too, but don’t feel defeated by it, feel accomplished that you have tried. It is a very powerful phrase though. I recommend that you only use it as I do, when your options have been exhausted and your limit has been reached. Say it like you mean it, and only WHEN you mean it. I hope I am not the only one who has this view of “I can’t”. I am who I am, and I have limitations. I try not to let them stop me, but they will, so maybe it’s better to say I like to keep the effect of my limitations to a minimum.

                Perhaps the best way to end this post is to say I can’t have people in my life who don’t accept this part of me. 

Wednesday, January 23, 2013

Help Wanted?


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City:                                  State:           ZIP Code:                
Graduation Date (or number of credits completed):                

School Name:                                            
City:                      State:           ZIP Code:                
Graduation Date (or number of credits completed):             

(Who are we kidding?  We know this will be your first real shot at a job)

Can you perform the tasks outlined in your job description without reasonable accommodations?
Good, you will have to       X       
Do you have unreliable paratransit to work? Yes                 No              

(Because we know you do not have professional references):
Reference 1:
Name:                                                          Phone Number:          

Reference 2:
Name:                                                          Phone Number:         

Reference 3:
Name:                                                          Phone Number:                                

Monday, January 21, 2013

Where's the national holiday for us?

Martin Luther King, Jr. was born on January 15, 1929. Most, if not all of us learn about his contributions toward civil rights in school. We've heard the "I have a dream" speech at least once in full. His accomplishments should be celebrated, but my question is, where is the disabled equivalent? Mr. King's civil rights movement was based on race, and it was successful, but there are still many of us who aren't treated equally. I am a member of a minority that isn't acknowledged by the government. As far as the United States government is concerned, I'm a white male, but that doesn't begin to explain my identity. I am a white male who has disabilities and a chronic illness. The powers that be in this "great" nation have told me, through the Social Security Administration, that I am not disabled, that I don't qualify for federal disability benefits.  The fact remains that the government shouldn't determine whether or not I'm disabled. I'll admit that they have to be there to determine the difference between legitimate disabilities and the hypothetical and extreme notion of "I got a paper cut at work, now I want government money". I am a minority. I didn't acquire a disability on the job, I was born with mine. People don't look at me the same way as they would look at somebody who lost a limb in a construction accident. "Well he was working hard when he became disabled", Why does that make him more worthy of "benefits"? The more important question, perhaps, is why is disability determination always in the hands of non-disabled people? In government and in standard job placement, somebody without a disability is most likely, but not always in charge of determining who gets benefits, or who gets accommodations on the job. I've been discriminated against, and the "perpetrator" of the discrimination was a lawyer who works for the state! Because she had a family member who has the same disability I do and was successful with it, she seemed to cross it off the list of conditions that "count" as disabilities. Maybe someday people will believe me and others like me when we say "I have a disability" or "I can't do that." Mr. King had a dream, I do too, and I don't think I'm reaching too high.

My dream is that I no longer have to be nervous about applying for a job or for social security. My dream is that people will acknowledge that I am the authority on how my disabilities and my chronic pain affect my own life. I hope that the phrase "with or without reasonable accommodations" is rewritten in employment applications. If I need an accommodation to perform my job on the same level as my non-disabled peers, I should not have to worry about a supervisor saying to me "well, you said you could do the job with or WITHOUT accommodations." My dream is when I say I can't do something, or I need help, that people believe me, help me and avoid lecturing me about a positive attitude. Part of being independent is knowing when to ask for help. My dream is that if I say I'm "out of spoons", people will understand and respect it.

Maybe we should have our own "version" of Martin Luther King Day. Maybe it should be Christine Miserandino Day. Christine Miserandino is the author of "The Spoon Theory", an autobiographical account of life with Lupus. The title came about through a conversation she had with her friend about energy management, and you will understand what "out of spoons" means after you read it. Today, she has a following that includes people with all sorts of disabilities and chronic illnesses. Those of us who subscribe to The Spoon Theory identify ourselves as "spoonies". Spoonies are people too. We may need accommodations to have a career and live our lives to the fullest, but that doesn't mean we are second-class citizens or that we are less entitled to life, liberty, and the pursuit of happiness.