Not Letting Disability Stand in the Way of Success

If you have a disability, you may feel that you’ll never reach your potential or be as successful as your friends without disabilities. You probably have been frustrated as you see your classmates accomplish tasks and goals more quickly than you do, and wonder if you are destined for a life of failure and disappointment.

However, many people with disabilities have gone on to lead successful, productive lives full of personal and professional accomplishments. Chances are, you’ve even heard of some of them!

Justin Timberlake has OCD (obsessive-compulsive disorder) as well as ADHD (Attention Deficit Hyperactivity Disorder). He first gained fame in the late 1990′s as a member of boy band N’Sync, perhaps best known for their hit song “Bye Bye Bye.” After N’Sync broke up in the early 2000′s, Timberlake went on to become one of the biggest celebrities of the 21st century. In addition to writing, producing, and releasing two solo CD’s of his own, he has also starred in a number of highly successful movies including The Social Network and Friends with Benefits, written and produced songs for other artists, and won multiple awards, including three Emmys and six Grammys. Other celebrities with OCD include actor Leonardo DiCaprio, soccer player David Beckham, and actress Megan Fox.

Michael Phelps was diagnosed with ADHD as a young boy. He had so much trouble sitting still and paying attention in school that his teachers told his mother that he would never be able to focus on anything. He was able to channel his energy into swimming, and went on to become a competitive swimmer.  He proved his teachers wrong by winning 19 gold medals in the Olympics and breaking the Olympic record.  Other celebrities with ADHD include “Dancing With The Stars” finalist Karina Smirnoff, actor and rapper Will Smith, actor and comedian Jim Carrey, and pop superstar Britney Spears.

Samuel L. Jackson had a serious stutter as a child. At the suggestion of his speech therapist, he got involved in acting as a way to improve his speech. He grew up to become an Academy Award-winning actor, starring in movies such as Pulp Fiction and Shaft.  Other celebrities who once had speech impediments include Bruce Willis and Julia Roberts.

John Mellencamp has spina bifida, a disorder of the spinal column. His disability didn’t stop him from becoming one of America’s most beloved rock singers and a member of the Rock And Roll Hall of Fame. His numerous hit songs include “Small Town,” “Little Pink Houses,” “Jack and Diane,” and “Hurts So Good.”  Other celebrities with spina bifida include Grammy-winning folk/country singer Lucinda Williams and pro golfer Sebi Garcia.

The hit television series Glee includes several cast members with disabilities. Jane Lynch, who stars as cheerleading coach Sue Sylvester, is deaf in one ear. Lauren Potter (Becky Jackson) and Robin Trocki (Jean Sylvester) both have Down Syndrome.  Also, The Glee Project, a reality TV show/talent competition in which the winner gets cast on Glee, included three contestants with disabilities this past summer. Ali Strocker has been paralyzed since she was in a car accident as a toddler, and uses a wheelchair. Charlie Lubeck has ADHD and autism. Mario Bonds is blind. Although none of them won the competition, the disability community became more represented on TV as a result of these three finalists.

So, if you have a disability, think of all that these celebrities have accomplished, and say, “bye bye bye” to the notion that you’ll never be successful!

 

- Authored by Becky Rizoli

Advocacy or Self-Advocacy: There is a Difference

Advocacy. Advocate. Self-advocacy. Advocating. These are the buzzwords in the disability world. The ones thrown around at conferences, IEP meetings and donor banquets. They are important to professionals, parents and people with disabilities. However, they mean different things in all three of these contexts, and that’s not always acknowledged.

When I was a kid, my mom worked a lot with other parents of children with disabilities. She taught them to advocate for their children. I grew familiar with stories about fighting for the accommodations needed to make sure a child “survived and thrived” in school. And even though every parent loves their child exactly as they are—they are still working to raise the bar, the way any parent is. The thing is, parents have a comparison. They have experienced life as an able-bodied person. Maybe they even have other, able-bodied children. Thus, their advocacy becomes about making sure their child has “the same opportunities as any child” and “isn’t seen any differently” than an able-bodied (or “typical”) child would be.

Growing up in this environment taught me a lot about standing up for myself. It taught me that I am entitled to accommodation when I need it. That the playing field can be, and should be, evened. But it did not prepare me for the difference between advocacy and self-advocacy.

I don’t have an able-bodied life to compare mine to, and I no longer have my parents around all the time to make up for the basic aspects of living that my disability makes difficult. When your body makes it difficult to cook, clean or walk to the T, accommodation becomes less about leveling the playing field, and more about getting through the day. Advocacy isn’t about fancy things, like new equipment that will make you the envy of your classmates. It’s about telling your roommates that you can’t lug the trash bag down the stairs. It’s about having to admit that, in fact, your life is different. And not in the, “all-of our-lives-are-different,” or “celebrate uniqueness” way parents talk about. In a very real way, day-to-day living is harder than it is for most people.

One of the elements that always bothered me about parent advocates were the speeches where some parent would talk about mourning the expectations they had for their child. Think of it this way: A kid with cerebral palsy might not play Major League Baseball. But that able-bodied kid the parent dreamed of might not have either. Who knows, the child with CP might. Or they might go on to be a baseball commentator. The possibilities are there.

That’s what parents have to focus on. Their advocacy opens the door for possibilities. That way, when their kid is an adult struggling with the day-to-day tasks of daily living, they’re already on the path toward achievement.  

I know that I can do whatever I want to do. My parents ingrained that in me. They didn’t tell me it’d be this difficult. I’ve had to learn that for myself. And I think that’s as it should be.

- Authored by Chelsey Blair Kendig

Mixing Up the Mainstream

When I entered the school system in 1992, my parents were quick to advocate for my right to be educated inclusively. I was physically, not cognitively, disabled. Had I been put in a segregated classroom, I would have been the only verbal child, and the only mobile child. The school administrators believed I could “set an example.” My mother pointed out that I would have no one to be “my example” and enrolled me in mainstream education.

I benefitted greatly from inclusive education, mostly because there was no reason I shouldn’t. However, I became the only physically disabled child in the classroom for all twelve years of school, plus four years of college.  In Claiming Disability Knowledge and Identity Simi Linton comments on some of the challenges raised by the current model of inclusive education. She argues that it:

“places the mainstreamed children in the awkward position of having to look and act as nondisabled as possible to maintain their position in general education and, as a result, it marginalizes even more the disabled children who can never play those parts. Further, and rarely discussed, mainstreamed children lose the opportunity to be with other disabled children.”

 Linton, Simi (1998-01-01). Claiming Disability (Cultural Front) (Kindle Locations 1017-1019). NYU Press reference. Kindle Edition.”

It’s the second part of this quotation that I wish to focus on, the idea that mainstreaming children keeps them from being able to spend time with their disabled peers. I think this rings true for society in general, not just school. As a kid, I was lucky. My mother worked with other parents of children with disabilities, and we formed a posse of sorts. A group outside of our mainstreamed-school lives, where no one else quite got what it meant to live with a disability. They were the people to whom I could say “Do you ever….?” and the answer would almost always be “yes.” But in school, no one quite got the reason behind my continued absences, the trouble I had keeping up on field trips or the disability terminology I threw around like a second language.

Now that I’m out of the public education system and in the “real world” I find it’s become harder to seek out people with disabilities to relate to. Partially, I think this is a side-effect of the issue Linton raises. Some people with disabilities in the mainstream are encouraged to perform as “nondisabled” and don’t acknowledge that there are aspects of their lives more easily understood by people who have disability in their lives. Disability organizations and support systems I have encountered seem to be populated by those who were not mainstreamed, and were thus allowed to identify as disabled. Yet some of us lead double lives, joking with friends who will pour the soda into the cup for you, but might not quite get how annoying it is to have such crappy fine motor skills.

I don’t think this is the ideal situation. I often look back with longing at the late-eighties when people with disabilities were banding together to fight the civil rights movement. As a nineties-child, one of the ADA generation, I benefited greatly from their struggle, but I also envy their camaraderie. I’m by no means arguing against mainstream education. I’m a product of it. But I shouldn’t have been the only disabled kid on the block. I think it’s important for people with disabilities to support each other, to acknowledge that we can be part of the disability community and successful in a world that isn’t quite as inclusive as it would like to think.

Why Can’t I Just Be NORMAL?

I often talk about being proud to be different. I say that my difference is the very thing that makes me unique and the person who I am, and how important it is for all of us to celebrate our differences, even when those differences are disabilities. I write blog articles about it. I present workshops to teens about it. I even just finished writing a book about it, which is pending publishing. It’s my personal philosophy, and it’s what’s helped me make it so far and accomplish so much.

But I’ll be honest. Sometimes, I wish I could just be normal. I wish I didn’t have to depend on medication just to make it through each day, and go through the hassle of having my doctor write a prescription every month and have it filled at the pharmacy.  I wish that I could focus well enough to safely operate a motor vehicle without being distracted by everything else on the road, and that I didn’t have to rely on family, friends, or public transportation to get from one place to another.  I wish that I could go to a party or a bar, socialize with my friends, and actually have a good time without becoming overwhelmed with all of the sensory overload that everyone else somehow manages to filter out. I wish I could even order a drink or two without worrying about the effect it might have on my medication. 

I look at the pile of dirty dishes in the sink, the laundry hamper overflowing with dirty clothes, the constant disarray of my desk and kitchen table covered with “To Do” lists, and feel so overwhelmed with all the little things I haven’t done yet, and that I could easily get done if I could just manage to stop wasting time for just a few minutes. I look at the chaotic mess of my house, which is a perfect metaphor for my chaotic life, throw my hands up in the air, and wonder, “Why can’t I just be NORMAL?“

Oh, I know. I should be strong and practice what I preach to others about being proud of my differences and celebrating myself.  I need to remember the pep talks that others gave to me when I was younger about how my difference can be a gift; about how the very thing that makes me disorganized, inattentive, and messy also makes me creative, intuitive, clever, and how it enables me to make connections that other people miss; and how I should use my situation as an opportunity to educate others and that I have something special to share with the world.  However, being labeled “special” and “different” isn’t always a good thing, and at times I find it to be stigmatizing.

There’s nothing I can do about it.  I’ll always be the way I am, and my disability will never go away. So, I figure, I have one of two choices. On one hand, I can lock myself up in my room and lament my lot in life while listening to depressing music, and go around every day with a frown on my face, leading to premature wrinkles that will make me look ugly and old in about five or ten years; ultimately dragging everyone around me down to the depths of misery as well.

Or, I can choose to accept my difference as a normal and natural part of life, and know that while I may struggle, I am more than just my disability and I refuse to let my disability define me. I can remind myself that while I’m not “normal” in the traditional sense, who I am is what is normal for me; a philosophy shared by the creators of “I am norm.”  Their website, www.iamnorm.org, is a resource created by and for young people with disabilities, and spreads the message that everyone is normal. I have only one life, and I can choose to make the most of it using what I have and all the things I can do, rather than lamenting about the things I can’t. I can use my many gifts to be an inspiration to other people, and hope and pray that my words and my life can make a positive change to other people who are different or who struggle with obstacles.

- Authored by Becky Rizoli

Disclosing

The first semester of college or university is a huge transition for everyone, but for a student with disabilities, it can be especially challenging. When I think back on the fall of my freshman year, I realize that the semester could have been far less stressful if only I had done one simple thing differently.  I wish that I had been open from the beginning about my diagnosis of Attention Deficit Disorder (ADD).

Although I had been diagnosed with ADD in second grade, up until this point I never really had to disclose my diagnosis to anyone.  The special education teachers in my school district advocated for my needs and accommodations.  They told all my teachers that I was on an Individualized Educational Program (IEP) and that under state and federal law, they were required to make accommodations for me in school. These accommodations included taking extended time on tests, taking my tests in a separate room so I wouldn’t be distracted by the other students, and the use of a computer for in-class essays.

As I was getting ready to apply to colleges, I learned that I wouldn’t have an IEP in college, and that I would have to speak up for myself in order to get the accommodations I needed.  I had to know the name of my diagnosis and how it affected me; and I also learned how to ask for the accommodations I had the right to under the Americans with Disabilities Act.  This process is known as self-advocacy.

I was quite anxious at the thought of disclosing my diagnosis to others. For one thing, I had never done anything like this before.  Also,  when I was first diagnosed with ADD, my parents told me that I was not supposed to tell anyone about the medication (Ritalin) that I was taking to help me pay attention.  The reason why they told me not to tell anyone was because they wanted my teachers to see how I did in school both on and off Ritalin. The doctor had told them that if my teachers didn’t know that I was on Ritalin, they would be able to give a more objective report of my behavior and progress.  At the time, however, I thought that my parents were telling me to keep my diagnosis a secret, and I came to believe that having ADD was something shameful. 

I had no problem disclosing my diagnosis to my professors, but I didn’t reveal it to my peers or classmates or the other students who lived in my dorm. I was afraid that if they knew I had ADD, they would think less of me and harass me.   I had been bullied in middle school and shunned in high school for being in special education, and I believed that my college classmates would be just as intolerant if they knew of my difference. 

I also had heard several people make jokes and comical remarks about ADD, such as, “Oh, what’s wrong with me today? I keep spacing out, maybe I have ADD,” or “Wow, Susie’s got so much energy tonight.  Looks like she forgot to take her ADD meds!”

Those jokes and comments led me to believe that the world generally viewed people with ADD and similar neurological disabilities to be inferior to others.  I believed that if I told my peers about my diagnosis, they would laugh at me and say things like, “You have what? Are you for real? You mean that you’re one of those crazy hyper freaks who need to take medication in order to function? Are you some kind of space shot, or what?” 

For most of my first semester, I didn’t tell anyone (besides professors) that I had ADD and kept it hidden. I tried to pass off as a “normal” college student; somewhat unaware that there’s really no such thing as “normal.” Now, as I look back, I realize that by hiding my diagnosis, I was not doing myself any favors. Not only was I hiding a part of myself, but the students I lived with didn’t understand why I often didn’t pay attention to them when I was talking. They thought I was being rude and tuning them out on purpose, which made them not want to socialize with me or get to know me. This made my first semester in college very lonely.

Eventually, I came to a point where I realized it was no longer wise to hide my diagnosis, and finally told my roommate that I had ADD.  She was very supportive of me and encouraged me to tell others as well.  As I worked up the courage to tell my friends that I have ADD, I was met with a variety of responses.  Some of them didn’t really know a lot about ADD and wanted to learn more about it. I saw this as a great opportunity to educate them, while practicing my self-advocacy skills.  Some people told me that they knew others with ADD, which made me realize that I wasn’t alone. 

Not one person laughed at me, called me a freak, or thought less of me once I told them I had ADD. In fact, they were all very glad that I had told them, and they appreciated my honesty.  I realize that although people sometimes make jokes about conditions such as ADD, they really don’t mean anything malicious by it.  They’re just trying to make people laugh, and fail to realize that their jokes or comments may also be hurtful to some.  All people often do foolish things without thinking about the consequences (I know I certainly have!), but this doesn’t mean that anyone hates people with ADD or any other medical condition, or views them as inferior.

 If you are a college or a high school student with a disability, I hope that you can learn from my story. Don’t be ashamed to disclose your diagnosis to your friends or roommates. There is no shame in having ADD or a learning disability, any more than having allergies or diabetes.  They are all simply medical conditions, and while they are a part of who you are; you are more than just your diagnosis. 

My advice to you would be to say something like, “Oh, just so you know, I have ADD, so if you ever see me staring into space or I act like I’m not listening to you, it’s not that I’m tuning you out on purpose.  Just speak up and let me know so I can pay attention to you.  Oh, and I also get distracted by lots of noise when I’m trying to concentrate, so when I’m studying or writing a paper, try to keep it down, okay?  I’ll try to do my part by putting on headphones to drown out the noise, but I’m just asking you to do your part as well, okay?”

This is just an example, and of course, it should be altered for your specific needs and conditions.  Substitute “ADD” with the name of your diagnosis, and your symptoms and modifications as needed.  If you are still in high school, perhaps you could sit down with your special education teacher and/or your parents and prepare something similar to say.  Go over it a few times if you want. Maybe write it down if you find it to be helpful.

 Ultimately, it is your decision who you choose to tell and who not to tell.  I have discovered that the more open you are about your diagnosis, the more you will come to accept it as a totally natural part of yourself that in no way diminishes your worth as a person.

   - Authored by Becky Rizoli

A Short History of Nearly Everything FCSN

Following the passage of Massachusetts’ landmark special education law, Chapter 766, in 1972, the group of parents who had helped advocate for the law’s passage formed the organization that became the Federation for Children with Special Needs, opening their doors in Boston in 1974.  They sought to help parents get the most out of the new Massachusetts inclusive education laws. Through the years, with the advent of national laws, the ADA and more, the Federation has evolved to fit the changing needs of children with special needs throughout Massachusetts. They reached out to parents in other states with NECTAS, held national conferences and produced materials in other languages. Meanwhile, they adapted to the changing technologies, building interactive websites, social networking pages and professional videos to provide information for families all over the world.

As FCSN evolves—grows up, in a way—so do the children it served. They become young adults with voices and opinions of their own. They learn what they need to be successful in spite of the challenges presented to them by the able-bodied world.

I, and the others who will be contributing to this blog, are those children. We haven’t all been served directly by FCSN, but we’ve all encountered the world of disability in our own way. We’ve combated obstacles, faced setbacks, experienced joy. Often our views differ from our parents and the others around us, even though they helped shape our perspective, because we now have a solid grasp of what matters to us.

We look forward to sharing all of that with you.

   - Authored by Chelsey Blair Kendig