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?


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:                                                          

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.