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.

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.

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. 

Help Wanted?

APPLICATION FOR EMPLOYMENT

This application is only available in large print and Braille. If the format of this application is inconvenient for you, please contact our Human Resources manager and he will return your call sometime between a month from now and the day after you accept another job.


Name:                                                                       
           Last                              First              MI

Date of Birth (Defect):                        Benefits Denial Number (SSN):         -      -         

Address:                                                                                 
              Number and Street                        Apt/P.O. Box Number

                                                                                                                     
City                                                                                    State        ZIP Code

Email address:                                                 Phone:                                 

Preferred method of communication
(check one so that we know which one not to use):
             Email            Phone

Date available to start:                            Fair rate of pay for this position:$            /hr.

(Special) Education:

HIGH SCHOOL:

School Name:                                                
Address:                                                      
City:                                      State:           ZIP Code:                
Graduation Date (or highest grade completed):                         

COLLEGE/UNIVERSITY/TECHNICAL SCHOOL:
School Name:                                                            
Address:                                                               
City:                                  State:           ZIP Code:                
Graduation Date (or number of credits completed):                

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

EMPLOYMENT HISTORY:
(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              

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

Reference 2:
Name:                                                          Phone Number:         
Relationship:                                                          

Reference 3:
Name:                                                          Phone Number:                                
Relationship:                                                          

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.

"Equal Employment Opportunity"

That phrase pisses me off so much it's not even funny. It's explained pretty well on costco's website with this report:

http://content.costco.com/Images/Content/misc/PDF/2010-Consolidated-EEO-1-Report.pdf

"Equal Employment Opportunity" is a lie. If you look at that report, it is only concerned with gender and race. These factors are important, sure, but they all leave one thing out of what is otherwise "equal". What about the number of people they hire who have disabilities? I've seen a few applications in the last couple of days that state that the company doesn't discriminate based on gender, race, religion, disability, or any factor protected by law. If you really don't discriminate based on disability, why is it so damn tough for those of us with disabilities to find work? If opportunity was truly equal, companies like costco would not only advertise the fact that they hire people with disabilities, but they'd be proud of it. I'm not asking to be hired on the sole basis of my disability, I have valuable skills, but I'm asking that my disability should not be the reason I lose a job opportunity. The law says that's not allowed, but all these companies have to do to cover their ass is find another reason not to hire someone like me. In my case it might be lack of experience or something else, but obviously they won't blatantly tell me that they don't want to hire someone with a disability. Doing that is essentially like saying "go ahead, sue us, we already wrote out the check." They won't tell me they refuse to hire me because of my disability, but it seems to be what they mean.

Where is the happy medium? Disability shouldn't be the reason to deny someone a job, but it shouldn't be the sole reason we get hired either. It's even uncomfortable to bring it to an employer's attention. We never know how they'll react, especially those of us whose disabilities aren't quite as visible. I know I've hidden my CP from people for a while before they asked me about it. What if that happens on the job? Would I get fired because I didn't disclose it right away?

More disability-related confusion, awesome...

Somebody give me a shot and make me realize Equal Employment Opportunity is truly equal, it doesn't seem so right now.

Reasonable accommodations

I've been looking for jobs lately and there's one thing on every application that gets me. Every job application will ask something like "can you perform the assigned tasks with or without reasonable accommodations?". My answer is always "I don't know yet", but they don't let you answer that way on the application. The first reason for that is that I'll never know if I need accommodations until I'm actually on the job. The second thing about this is that "with or without accommodations" thing. That leads me to believe they don't want to make any effort to accommodate me if I need help. It's also a very confusing way to ask a question. "With or without" makes me think that the answer is always "yes" but then what do they take that to mean? They would probably look at me and tell me that I said I could work without accommodations and possibly fire me when I ask for them. That's discrimination, and I know it.

Every time I bring it to somebody's attention that something I write on a job application opens me up to discrimination, I'll mention that if I can prove discrimination, I may never have to work a day in my life because I WILL be taking that company to court. I'll tell my mom to find the money for it because the case would be so solid that I have a real good chance to win. Sure, I'd rather be working for a living, but I don't know why everyone is essentially telling me to let these employers walk all over me. Everyone's answer to this seems to be "don't tell them you have a disability." Yeah, sounds like a plan...when they find out I have a disability, they can possibly fire me or choose not to hire me.

The job market is tough for anyone right now, but it's even more difficult for people with disabilities. What can I do?