Wednesday, April 3, 2013

Awareness or Acceptance? You Decide.


            April is Autism Awareness Month. According to the most recent statistics by the Centers for Disease Control and Prevention, 1 in 88 children is diagnosed with an Autism Spectrum Disorder. There are months and days dedicated to a myriad of disabilities, all with the intent to raise awareness. There is even a month meant to raise awareness of disabilities as a whole. But a recent blog by a parent with a son that has Autism (What I learned from my autistic son) has pointed out a key word in the various awareness months: Awareness. For such a simple word, there is an important distinction to be made.
Merriam-Webster defines awareness as “having or showing realization, perception, or knowledge”. With every “awareness month” we make society knowledgeable about that disability.  We increase the perception of the disability.  But what more does that accomplish? Do people gain a better understanding of the obstacles we face? Does it stop them from questioning the accommodations we request, the actions we take, and the assistance we need in order to be independent? I’m sure these days, months, and weeks of awareness all open people’s minds to think about the various disabilities in a new way. Maybe they even think about it for the first time, or gain a perception they didn’t have before. But shouldn’t we want more at this point? Don’t we deserve it?
I was raised to look past how a person appears on the outside and focus on who they are on the inside. I was taught to accept differences and understand that normal is never attained. No one completely conforms to a certain type or standard. There are differences in all of us. They should be celebrated and welcomed because they play a part in making us who we are. They help shape our beliefs, passions, and ideas. Without differences, how would we develop; how would we innovate and create? I doubt life would be very interesting.
We are learning to accept people of difference races, religions, and sexual orientation, among others. We’re not perfect by any stretch of the imagination. Racism and bigotry still exist. Such hatred, ignorance, and intolerance probably always will. But if we can grow as a society to understand, to become aware of these differences between people… if we can grow to accept others for who they are, regardless of race, religion, and sexual orientation, why is it so difficult to accept people with disabilities? Are we less deserving of respect or rights?
The reality is that any of the groups listed above, and others not listed, can become a part of the Disability Culture. Having a disability can be genetic or acquired. But people fear the idea that they might become less of who they were. They view disability as a set back, a hindrance. They focus on the potential negative aspects and perpetuated stereotypes so much, that they forget an important point. We can choose who we want to be. Our dreams can change. We can adapt to our circumstances. Millions of people with disabilities do this and more every day. We hire assistants to help us get out of bed; we get tutoring or extended test time in college to reduce stress and distractions; we seek counseling and support. We recognize our obstacles and we overcome them, not because we are some special brand of inspirational heroes. Everyone has obstacles in their life. We do these things because our obstacles require it. We do these things to maintain our independence... to be successful and contributing members of the larger community.
            Awareness is important. I won’t deny that people need to learn about different disabilities and expand their perception. But I think we have also reached a point when we must accept each other and celebrate that. Acceptance of my disability… of who I am… of what being a person with a disability means to me, and the pride I take in it… that’s what I choose to focus on when my disability day/week/month comes around. What about you?

Friday, March 29, 2013

To Love, Honor, Cherish, and… Assist with Daily Living Needs?


             I am overwhelmed this week with the decisions being made by our nation and its leaders. The U.S. Supreme Court heard two cases this week on the legality of same-sex marriage. Reading the news reports and personal stories, I am reminded of the struggles people with disabilities continue to face in marriage equality. And I still cannot fathom why any government feels it should have the right to dictate the definition of marriage. Marriage is a declaration of lifelong love and commitment from one person to another. Period. I will love whomever I fall irrevocably in love with, regardless of gender. No one should get a say in that decision but my partner and myself. Unfortunately, as a person with a disability, I have the added burden of considering how marriage will affect my overall financial and healthcare needs.
            Having never been married (and still basking in the life of a Bachelorette!), I took some time to read articles recommended by friends on the subject of marriage and disability. What I read caused me to rethink the way I view marriage. A lot of people with disabilities receive SSI at some point in their lives. As a recent graduate, SSI is still my main form of income. If you get SSI and marry, however, there is a strong likelihood that your benefits will decrease or you may no longer be eligible. How much you make, and whether you still qualify, is now based on your combined assets. Apparently it’s easier for a couple to live on less income than would be required of an individual. Only the government would come up with such a theory!
            And if you think that’s bad, I haven’t gotten to the best part. In most states, eligibility for SSI means eligibility for Medicaid. For some, independence hinges on the personal care assistance Medicaid pays for. Private health insurance doesn’t cover assistance with daily living needs, so what happens when Medicaid is lost? How are people with disabilities suppose to continue living independently without the means to do so? Our partners cannot be expected to fill those needs on a permanent basis. I think I speak for a lot of people with disabilities when I say that being taken to the bathroom, showered, and dressed is just not sexy! Sure, I will appreciate my partner’s ability and willingness to assist me with such tasks when necessary, but relationships that cross into the personal care area too often, can be difficult and take away from intimacy and romance.
            Marriage used to be my ideal happy ending. As a hopeless romantic, I still cannot wait for the day when love sweeps me off my feet and I find my soul mate. As a realistic individual, I am now continuously made aware of the long road we face as a nation before the right to marry your true love does not come with penalties and fine print attached. I guess it all comes down to what I believe in. How hard am I willing to fight for my right to marriage equality? I’m proud to say I believe in marriage equality for all people. The right to marry affects us all. It's time we take a stand! What side are you on?

For more information on marriage and people with disabilities (explained way better than I ever could) try these links:

Friday, March 22, 2013

Rolling in the Fast Lane (With a Few Fender Benders)


            I was born with Limb Girdle Muscular Dystrophy. Diagnosed at age 7, I hadn’t yet realized what different was or how it applied to my world. I caught on fast. As a child, I spent a lot of time struggling against my disability, trying to force my body to fit a mold it wasn’t meant for. In high school, as I explored the social venues and found my place in the adolescent hierarchy, others praised me for my perseverance and pushing the boundaries of what “people like me” could do. I was just having fun. Just trying to have the best high school experience I could. Looking back now, I know what I did was so much more than participate in the social scene of the teenage wasteland. I changed the perception of what people with disabilities could do and become. And in changing this perception, I changed lives.
            For the last year, I have had the pleasure of carrying the title Ms. Wheelchair Tennessee 2012. And what an amazing year that has been. From the children I read to and played with, to the politicians I met, each event I attended allowed me to reach out to others. The greatest moments came when I could speak out about who people with disabilities are: proud, capable individuals, seeking nothing more or less than to be given an equal playing field. I thought I was the perfect role model. Rolling in the fast lane to changing the world. Taking what millions of people with disabilities who came before me had accomplished and fighting for more. Fighting for better. Somewhere along the way, though, I forgot I was human. And then the fender bender happened.
            Muscular Dystrophy is a degenerative disease involving muscle weakness and loss of muscle tissue, increasing with time. I lose function of different movements every so many years. Sometimes I don’t even notice until months after it’s started. That’s how gradual it can be. With this loss of function naturally comes mental, emotional, and physical adaptations and acceptance. But as I grew into an advocate and role model for children and other adults with disabilities, I pushed away the emotional aspect. I had this idea that I had to be the ultimate person with a disability: completely accepting of every aspect of life and disability all the time. I didn’t allow myself to mourn the parts of me that changed or abilities I lost. And on the rare occasion I did, I felt ashamed of feeling so crippled. I love my life, so why did I feel so incapable?
            In speaking with a friend and fellow member of the Ms. Wheelchair family, I was reminded that I am first and foremost a human being. I love. I hate. I laugh. I cry. In short, I feel. We all do. We all have loss in our lives, and we have every right to mourn that loss, whatever it may be. We all have a right to our emotional moments. I was reminded that the best role models are those that are truly transparent. My disability, my abilities, my flaws and talents, all these and so much more describe and help to define who I am. And what better way to show people the success of people with disabilities that to open up. I have bad days. I have days where I think, for just a minute, that if I had the chance to walk I’d take it; days where I hate the hassles and planning I have to go through just to get ready for my bus in the morning. And if I don’t share this with others, then what kind of role model am I really? Who would benefit from the lessons I’ve learned and the stories I have to share?
I hope when you read these posts you’re able to relate to something I say. Mostly, I hope they touch you… change you… inspire you... empower you to embrace yourself for who you are, without limitations. Because at the end of the day, the most important thing is that you love yourself. Enjoy!