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:

http://www.specialneedsalliance.org/the-voice/4/9

http://ici.umn.edu/products/impact/232/22.html

http://www.ssa.gov/policy/docs/issuepapers/ip2003-01.html

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!