disability

My Hearing Aids Are Cooler Than Your Hearing Aids

Hold my hand and walk with me.
 We must break the back of social inequity;
 We must empower every individual with a disability
 To live with dignity in an inclusive society.
                          -William E. Lightbourne

 

Opaque has never been my favorite color when it comes to accessories, I'm more of a bright color, in your face, no mistaking my attention-seeking-intentions, sort of accessory wearer. However the clear-ish, cloudy opaque color has been the suggested color choice for my hearing aid mold for the past 20 years. The prevailing thought amongst audiologists must be that people who wear hearing aids probably want to look inconspicuous and pretend like they are not there. Who are we kidding? A little color matching will not detract from the obvious technological device in or around the ear. It's about as obvious as cubic zirconia earrings. Furthermore, being hearing impaired is one aspect of my selfhood that shan't be hidden, but rather incorporated into my selfhood, and thus my fashion.

 

Behold! No longer will my hearing aids continue to serve as an awkward and timid conversation starter amongst strangers. It is now one of my most expensive, personalized accessories, (insurance doesn't cover jewelry like this), my neon orange mold will invite conversation and beckon curiosity. This sophisticated device is synced with my iPhone and other bluetooth enabled devices, it allows me to rely a bit less on lip-reading, and affords me the bonus of having the ability to push a button to switch to hearing John Legend's smooth voice while I stare and nod and pretend to listen to you.  The neon orange color matches the color of my junior prom dress that I loved so much...form has never met its fashion match quite like this! Aerodynamically, a bumble bee isn't supposed to be able to fly, but it doesn't know that, so it flies anyway. Hearing aids don't know that society is still coming to grips with inclusivity by encouraging skin-tone colored features. But, hearing aids don't know that, so society will just have to adjust.

American Girl Doll, Build A Bear, and BuzzFeed (#ToyLikeMe) are hip to the societal shift of taking the shame out of disability by designing colorful, pimped out accessories, and fostering a sense of inclusion one doll at a time. Phonak, Beltone, Miracle-Ear, Oticon - it's your turn! Capitalize on this niche market, create a catchy slogan, contact me if you'd like; I'd volunteer to be your model (role-model, that is).

The bottom line is; my hearing aids are cooler than your hearing aids.

 

 

A Worthy Voice: An Adoptive Parent Who Cannot Carry Her Baby

I am an adoptive parent with a physical disability. There may be a common misconception that having a physical disability makes one less equipped to parent, and therefore less equipped to adopt children. But I find that growing up with a physical disability has prepared me in many ways for the unique challenges of adoptive parenting.

I have had cerebral palsy from the waist down since birth, which impairs my gait. I walk on my toes with my ankles out and knees in. I have heard it described as walking like a T-rex. This is a blunt but pretty accurate description.

My partner and I adopted domestically, because we wanted an open adoption that would allow our child's biological parents (birthparents) to be in their lives. That means that in order to adopt we needed to be selected by the expecting parents.

When we first started in the process, I excitedly called the adoption agency that we were planning to use, to make initial contact. When I told the social worker that I was disabled, she said "Oh, well, it will probably be a long wait, because birth moms will probably want a healthy mom." I explained that I was very healthy and active. She responded, “Well, you know what I mean. Have you considered going through a Christian agency?" After that phone call, I felt totally hopeless. I feared I would never be able to raise a child because of my disability. No one would want their child to have a disabled mom.

As it turns out, my disability was not an issue for us. We were found by a young woman who knew that we were the family for her little girl. Our adoption agency had to rush our paperwork to get everything done in time for the birth. Sometimes in the adoption process it is hard to know whose version of perfection you are living up to: is it the expectant mothers or the agencies who are looking for Joan Cleaver?

While my disability may have been viewed as a barrier to adopting, growing up with a disability has prepared me to be an adoptive parent in a number of ways. First of all, I know that not everything has to look the same. I can still walk; it just doesn't look like your walk. I can carry a laundry basket up the stairs: just not the way that you would do it. I can be a strong and loving parent, recognizing my own limitations. I had to make adaptions to carry my daughter when she was a baby. At age two, she is too big for me to carry now, but we still snuggle and tickle and walk holding hands. Above all, I can still build a strong and loving family: it just might not look like yours. My daughter's birth family is part of our extended family. That doesn't mean that I am any less my daughter's mom, or that my family is any less of a family. It just looks different. I am very proud of the family that we have built together.

I have spent my entire life answering insensitive questions about my personal life. I've been educating people for as long as I can remember. When I was in the first grade, I was so tired of all the questions about my walk and the staring from other kids that I made a poster about my disability and presented it to every class in my elementary school. By the time I was an adult, educating people in grocery store interactions was just part of life. So I am well practiced in the art of addressing such personal questions when they come up around my daughter's adoption, or when people ask me why she does not look like me. Sometimes I answer these invasive questions. Sometimes I don't. Sometimes I care enough to share with the person in front of me. Sometimes I don't. I hope I can show my daughter that answering such questions is really up to her.

Last but not least, my daughter and I both lost something at birth that we didn't know that we had. Now, I am not saying that being disabled and being adopted are the same. Obviously, they are not. But I think there are some similarities in terms of both living with loss, and the evolving understanding and meaning of that loss over the course of our lives.

My daughter and I both have the "what if" factor. When we first brought my daughter home, I was deeply saddened that she had already lost something, and that she had no say in it. No matter what I did, or how much I loved her, I could never make up for that loss. She would always have the questions: What if I wasn't adopted? What would my life be like? Who would I be? It reminded me of all the times growing up what I had wondered the same thing about myself. My disability is such a huge part of who I am that I often wondered who I would have been, had I not been disabled at birth. What path would my life have taken?

I hope that I can use these experiences to help my daughter navigate her own as she grows up. I will remember that, although I was sad at times, I never wanted to be someone else. I never disliked my life. I was just mourning an inherent loss. And so, when my daughter is feeling sadness related to her adoption, I will put my arm around her, and say;

"It is okay to be sad sometimes. It doesn't mean you are not happy with who you are, or your life. It doesn't mean that you don't love your dad and me. Sometimes you just have to let yourself be sad about what might have been. Please remember, all of this makes you the wonderful person that you are. You are stronger for the journey.”

--Mary Robison, Adoptive Parent

The Letter.

My mom sent this beautiful letter to my [new] family in Chattanooga...

Dear Deborah and family,

I’m Angela Tucker’s mom here in Bellingham, Washington and am very excited to be writing this letter. Have thought about this for a long time. Chattanooga had always seemed so far away as our family talked about it over the years but now even though miles apart it feels right next door.  It means a lot to Angela and our entire family to be able to meet you and your family.

I’m guessing that you might be curious how we became Angela’s adoptive family?  The story follows, but first I want to thank you for sharing Angela with us (even though some of you didn’t even know you were).  We thank you Deborah for choosing adoption.   Not only was Angela’s  life changed by being adopted, but our lives were changed as well.  What a blessing this was!  Her cheery personality and her ‘forever’ smile brought much joy to our family.  She was best friends  with our older daughter, Elena, as they grew up.  This was and still is a special friendship.  People joked as Angela turned 2 years old that I should just hook her to my side with velcro as she always followed alongside me wherever I went.  We were never far apart.  Her sports ability—kickball and PE (in elementary school), basketball, track, cross-country and softball in high school and basketball at Western Wash. University—made us all proud.  Music also filled our house—her piano, harmonica, karaoke and singing for no reason or any reason was daily.  She and sister Elena enjoyed numerous piano duets.  Angela’s hearing loss helped educate all of us about both the struggles of wearing hearing aids and the belief that all of life’s opportunities were ahead.  She added a lot to our family, to say the least.

Deborah, when Angela was born, you had asked that she be given opportunities in life to live up to her full potential.  We took this to heart, felt guided by your request and thought about it many times as we raised her.

We began our family in 1974 with the birth of our daughter, Elena, followed by the adoption of Shawna and Steven.  In 1986 we were anxious to adopt again and searched the adoption books of waiting children from different states hoping to find the perfect match.  It didn’t take long before we found Angela in the state of Tennessee book.  She was listed in this book as a ‘hard to place’ child due to her possible physical disabilities.  (She spent the first year with a Chattanooga foster family as her health issues were identified. The adoption agency did not know the cause of her disability.)   We knew she’d fit into our family as soon as we read it.  We notified our adoption worker here in Bellingham who then worked with the adoption worker at Bethany in Chattanooga to make this match happen.

David and I flew to Chattanooga a week or two before her 1st birthday and spent the weekend getting to know her and deciding for sure if she was the one.  (There was never any doubt she was the one!)  We met with a representative from Bethany, was given non-identifying information about your family and the first name of the birthfather.  We spent a couple hours with Angela to get to know her (she slept the entire time!).  Then on Monday, flew with her back to Bellingham.

We continued her physical therapy related to her disability but within 3 months was told by the physical therapist that she had improved enough that she didn’t need it anymore.  She shortly began to walk, run and do all the things expected even though there was still some mild tightness in her legs and arms. Her hearing loss wasn’t identified till she was about 4 years old.

And so this is how Angela became a Burt and a resident of Bellingham (about 75 miles north of Seattle) and Washington state.  As time goes on I’m sure Angela will share photos, stories, memories etc. about growing up as a Burt with all of you.  (Ask her about getting her wisdom teeth out while she was on crutches, the competition she had with a friend to see who could wear shorts to school every day of 5th grade, playing basketball in bare feet in Belize, the ride on the Desperado rollercoaster, Highway 3 in Mexico and of course, our yearly Burt Meatfest.)  And she’ll enjoy hearing from each of you what it was like growing up in Chattanooga.

She has been a joy to our family.   We thank you again for sharing her with us. We look forward to meeting you all next summer.

Simply beautiful. Thanks for writing this mom!