Disability
Cincinnati ReelAbilities About Appreciation
It has been about three weeks now since I left the Duke Energy Center, exhausted (and sick) from an incredible experience of being part of one of the hardest working teams you will ever meet, all working toward a goal of building something so powerful and important as to positively affect an entire region, and the way in which its people see, appreciate and welcome one another.
The Cincinnati ReelAbilities Film Festival organized by LADD is a leading example. It was the culmination of work by dozens of volunteers, a small core staff team who spent many long hours, sponsors, the media, and the community that ultimately made Cincinnati ReelAbilities a success. This was my second year serving as director of public relations for the event that has grown into one of the country’s largest film festivals centered around bringing people together to celebrate our uniqueness in our appearance, our cultures, and our ethnicities; and the way we participate in, see and interpret our world. Its films all shared a common theme of telling the stories of those who experience disabilities.
Susan Brownknight, executive director of LADD, has said time and again that ReelAbilities really speaks to who we are and what we value individually and collectively. What she referred to in her words is our sense of humanity, and the way in which we include and welcome each other in every facet of our community.
For four days, national celebrities were among us as we spent time meeting new friends, laughing, and opening dialogue to lead to new perspectives. Through the passionate messages of speakers at each of the parties, the discussions following films, and the casual networking in the hallways, communication flowed freely. Questions of curiosity and interest, that, under other circumstances may never be asked, were given open, honest and genuine answers. People diverse by age, race, religion, culture, appearance, and mode of pursuing life were valued. They were included.
Actor John Lawson told our audience at our Meet the Stars Opening Event, “One of the things I like about Cincinnati ReelAbilities is the hashtag #DifferentLikeYou. In those three little words, it says so much because we are all different like you but it is how we come together and use them that is our inspiration and our strength.”
RJ Mitte, our Premier Luncheon keynote speaker, so beautifully shared, “What you may perceive is abnormal is our normality. We live this. We know no different. I have never experienced a lot of these things these gentlemen and women have experienced in their life, and vice versa. The same can be said about you. There is a lot that you experience in your everyday life that we don’t know. The normality is that we all have our own normal and we need to remember that because we are all brought on this planet to evolve and to learn. And each of these challenges people perceive as disabilities are challenges that no one else except that individual will ever understand. Yes it is harder in certain areas. No one wants to have these types of physicalities, these types of mental weights but at the end of the day we all have them. Ours may be something you may consider severe but they are no different than everyday life. And we evolve, we grow and we try every day to live our normality. We wake up the same way. We do the same work. We live our lives and have families. And there really is no difference. And that is what we are trying to bring awareness to with this Festival. That is what is really crucial with these films. It brings a new normality to disability. You (the audience) can be that catalyst to represent that.”
Michigan Supreme Court Justice Richard Bernstein told our Interfaith Breakfast guests, “What this Film Festival is about, what the work that is being done is 
about, is about the idea of expressing the understanding and appreciating of the little things in life. It is the little things that we crave, that we want when we come in contact with a family of a disability. They want their child to be able to go outside, to the park, to go to school. They want to live a life of normalcy. They crave what makes life worth living.
The more that you crave those little things, the more that you want them. Those are things that go into life, the blessings. That is the core of creation. Celebrate the little things. The more you want a job, to go to school, to have a house, to have a family. That is the blessing.
When we spend time with people who have disabilities, we are not doing a charity. We are ultimately given the chance to connect with God. We are ultimately given the chance to appreciate life, to understand life. We are ultimately given the chance to come to appreciate everything in life that should be appreciated.”
Wow, such powerful, resonating words.
Following the Festival, a small group of us got together to celebrate. There we reminisced about some of the impact we saw. We remembered our VIP Bryan Anderson, a retired US Army sergeant, Purple Heart recipient, and Gary Sinise Foundation ambassador, showing a group of children how his prosthetic arm could rotate 360 degrees. We remembered when our VIPs stood before a full theatre of children to answer questions – one of them being, “How did you get your disability?” It was an opportunity for VIP and actress Jamie Brewer to explain down syndrome…and for VIP and actor/comedian Nic Novicki (who happens to have dwarfism) to tell them he didn’t eat his vegetables. And, after our Closing Night Event, one mother came up to someone on our team and shared that that night was the very first time her son had a reason to be proud of his disability.
Yes, Justice Bernstein, spending time at the Cincinnati ReelAbilities Film Festival absolutely gave us the chance to appreciate and understand life, and everything in life that should be appreciated. That includes appreciating each other.
Thank you Cincinnati, for helping us celebrate our differences, for having open and receptive minds to learning, for helping to be part of strengthening our region by welcoming and including everyone.
My 2017 Cincinnati ReelAbilities Photo Album
(note: after a few seconds, when you move your mouse over it, you can tap on one of the arrows to move forward or backward in the photo album)
Cincinnati ReelAbilities Celebrates Difference
These past few weeks (and months) my blog has slowed as I’ve needed to focus much of my energy on promoting the 2017 Cincinnati ReelAbilities Film Festival organized by LADD, Inc. (and a project for the Countryside YMCA and mixing in pet training). The Festival is now a week away, March 9 to 12, and I want to share information about it. I will be back after the Festival – I’ve already got some interviews lined up!
“The Cincinnati ReelAbilities Film Festival is a spectacle of human relationship in its purest form, generating an awareness of issues relative to us all. Awareness creates understanding, which in turn gives rise to perspective—and it is through perspective that we are able to truly appreciate and relate to others in our lives.”
-Richard Bernstein, Michigan State Supreme Court Justice
I can’t think of any words that more beautifully, more accurately explain our purpose when it comes to building a Cincinnati ReelAbilities with celebrities, parties, workshops, networking opportunities, and over 60 life changing films that showcase the art, lives and stories of people who have disabilities. Our goal with the Film Festival is to create a Hollywood-style event where our guests will have fun, meet new and enjoy the company of old friends, be moved in some way; and leave having been uplifted with a new perception of difference, appreciation and welcoming of each other.
Susan Brownknight, executive director of Living Arrangements for the Developmentally Disabled (LADD, Inc.) – the organizing agency, has said she gets asked all the time why her nonprofit is investing such a significant amount of time and resources into building a world class film festival.
“My answer lies in the very foundation of what we do and why we do it. At LADD, we are focused and passionate about creating equal opportunities and ensuring the dignity of adulthood for all people with disabilities in our region, a community that embraces, supports and values them,” she answered, “A film festival is a powerful way for us to facilitate that and to connect with others across differences that typically lead to isolation and a hardening across arbitrary lines of thinking. Our idea with ReelAbilities is that, at the end of the day, this Film Festival is about who and what we value, and why we value it.”
Celebrations Gallore!
Thursday, March 9 at 10:00 am: Welcome to Cincinnati: Meet the Stars Q&A Event with RJ Mitte and others
Thursday, March 9 at noon: Premiere Luncheon with keynote speaker RJ Mitte.
Thursday, March 9 at 6:30 pm: Premiere Night film reception and film screening of The Astronaut’s Secret.
Friday, March 10 at 8:00 am: Interfaith Breakfast featuring keynote speaker Richard Bernstein, the nation’s first blind Supreme Court Justice.
Friday, March 10 at 5:30: Veterans Reception with keynote speaker Michael Schlitz, retired US Army platoon sergeant, Gary Sinise Foundation ambassador and Purple Heart recipient, followed with a film screening.
Saturday, March 11 at 9:30 am: Veterans Brunch with keynote speaker Bryan Anderson, a retired US Army sergeant and Gary Sinise Foundation ambassador and Purple Heart recipient.
Saturday, March 11 at 5:00 pm: Cocktails & Zombies Party with the stars and screenwriters of Spring Break Zombie Massacre, Sam and Mattie; plus other Hollywood VIPs, and Cincinnati’s own Drew Lachey and Q102’s Jenn Jordan.
Sunday, March 12 at 7:00 pm: Local Films/Closing Night Party featuring game-changing films made by and about local people.
Workshops
Additionally, Festival guests can learn how to act, model, tell their story, see entertainment, and create films on their smart phone in workshops. Please click here for the full list. While all workshops are free, registration is required.
Celebrities Help Us Celebrate Difference
Best known for his role of Walter ‘Flynn’ White Jr. for five riveting seasons of AMC’s Emmy and Golden Globe Award-winning thriller, “Breaking Bad”, and the handsome face of GAP’s International 2014 “Lived In Summer” Campaign, RJ Mitte tops our list of Hollywood stars, dignitaries, and ReelAbilities film VIPs to join us at the Duke Energy Convention Center.
Please join us at 10:00 am on Thursday, March 9 to kick off Cincinnati ReelAbilities with a Welcome to Cincinnati: Meet the Stars Q&A Event with RJ and many of our other big name VIPs including Jamie Brewer, Lauren Potter, Kurt Yaeger, John Lawson, Nic Novicki, Bryan Anderson, Michael Schlitz, Boone Cutler, and Steve Wampler.
More VIPs will be joining us throughout the weekend’s events including Ali Stroker, Michigan Supreme Court Justice Richard Bernstein (as the keynote speaker for our Interfaith Breakfast), Sam and Mattie, Drew Lachey, Nick Clooney, and more.
Below is a list our leading VIPs and their information.
Bryan Anderson
Anderson is a retired US Army sargaent and Gary Sinise Foundation ambassador and purple heart recipient.
Richard Bernstein
A Disability Rights Attorney, he made history when he was sworn into office, becoming the nation’s first state Supreme Court Justice for the state of Michigan.
Jamie Brewer
Known for her role of Adelaide ‘Addie” Lagdon in American Horror Story, she is also the first model with Down syndrome to walk the runway at New York Fashion Week.
Boone Cutler
Cutler is an author, columnist, music video director and Warfighter Rights leader that has become the first nationally recognized radio talkshow personality who is also a combat veteran from the current war. In 2012, Boone was diagnosed with Early-Onset Parkinson’s Disease secondary to a blast-injury in Iraq and is the national spokesperson for the Warfighter Rights’ Movement.
John Lawson
Lawson is a television, film and commercial PWD actor with past roles in the long running television crime dramas, “Law and Order,” “Law and Order: SVU and FX AMERICAN HORROR STORY: FREAK SHOW.
RJ Mitte
Known for his role in AMC’s ‘Breaking Bad’, he was also the face of the GAP’s International 2014 “Lived in Summer” Campaign.
Nic Novicki
Nic has toured around the country as a standup comedian. Included in his acting credits are tv shows: The Sopranos, Private Practice, and Austin and Ally. He is also a producer and founder/director of the Easterseals Disability Film Challenge.
Lauren Potter
As an actress, Lauren is best known for her popular role as Becky Jackson in the popular television show, Glee. However, she also devotes much time to advocating and raising awareness for disability related causes..and against bullying.
Michael Schlitz
Schlitz is a retired US Army platoon seargeant, Gary Sinise Foundation ambassador and purple Heart recipient.
Ali Stroker
An actress known for her role in Glee, in 2015 Stroker made history by becoming the first Broadway actress in a wheelchair to appear on a Broadway stage
Sam Suchmann and Mattie Zufelt
These two best friends from Rhode Island met in Special Olympics and are filmmakers of the wildly popular, kick ass movie, Spring Break Zombie Massacre.
Kurt Yaeger
A former BMX rider turned actor, Yaeger is a below the knee amputee. His most recent TV credit s include the fan favorite character on FX’s hit show Sons Of Anarchy, the new Cinemax show Quarry and a new major recurring role on CBS’ hit NCIS: Los Angeles.
Stephen Wampler
As the world and his family watched, Steve Wampler who was born with a severe form of cerebral palsy, pulled himself with one hand 20,000 times in six days to conquer the world’s biggest rock, El Capitan in Yosemite National Park. The documentary of his journey was one of the 2015 Cincinnati ReelAbilities films.
Cincinnati ReelAbilities Film Festival
March 9 to 12, 2017
Duke Energy Center
Tickets, information, and film trailers: www.CincyRA.org
A Mother’s Lessons
My work on the Cincinnati ReelAbilities Film Festival organized by LADD, Inc. has connected me with some pretty incredible people in our region. Amy Delgado is one of them.
ReelAbilities is about bringing people together to learn from and about each other and to celebrate our differences that together make us stronger. Amy is a mother to two beautiful children who I got to meet at our Festival Launch Party earlier this year. Our purpose hits home personally for her as her every day involves striving to create solutions for encouraging kids, and in particular, her daughter’s growth.
Amy was 20 weeks pregnant when she and her husband got the news that her daughter would be born with Myelomeningocele (more commonly known at Spina Bifida). The years that have followed have been met with creative problem solving, working through challenges, much love, and sharing their lessons with others. Amy has a blog called Ability Hacker (named, she said, because, “ a ‘good hack’ is slang for a clever solution to a problem, and ‘hacking’ is the act of creating that solution.”) where she shares her lessons and insights with other parents of children who have disabilities.
I wanted to learn more about Amy and her insight that I think all of us can learn from.
Lisa: What are some things you would like to see parents teach their children about kids who have disabilities?
Amy: There are three things that, in my ideal world, parents would teach their kids about disability.
1. In some ways we are different, but in so many ways we are the same.
Look for the similarities rather than the differences. Maybe your kids and mine both love ice cream, or maybe both have curly hair. Everyone has things that are different about them – but we also have a lot that is the same. Finding sameness breaks down the barrier disability sometimes presents.
There is a fantastic episode of Daniel Tiger in which Prince Wednesday’s cousin Chrissie (who has a disability) comes to visit, and the topic of how to approach kids with disabilities is beautifully presented. The little jingle sings, “In some ways we are different, but in so many ways, we are the same” (Episode 133: Daniel’s New Friend/Same and Different). I’d love every parent to watch this episode with their kids.
2. Approach kids with disabilities & say hello.
When we go into a store or a restaurant, we draw a lot of attention. We come in with a determined, curly haired charmer whose leg braces are covered in butterflies and who is usually gleefully chasing her little brother around while using bright blue arm crutches. Adults react in one of two ways – they either smile at us and comment on how cute our kids are, or they look away / see their kids staring and shush them.
PLEASE please (please) do NOT shush your kids. Please don’t look away. Please DO smile and say hello. Please DO encourage your kids to come up and say hi and talk to my children. It is totally ok if they ask any questions. We know they won’t have the perfect words to ask what they want to know, and that’s ok. It really is.
By letting kids be curious and ask questions it teaches them that it’s OK to approach people with a disability. It opens a dialog and creates a conversation. When a parent shushes a child and encourages them to look away – that parent is inadvertently teaching their children that disability is something that is wrong, and that should be separate from the rest of the world. Kids with disabilities want to be included. We, as parents, need to model this inclusion and openness and kindness to all people, including those who have a disability.
I know it’s scary to let you child open up their mouth and not be able to control what comes out … but trust me… it’s so much better than the alternative.
3. Get creative and figure out ways to include children with disabilities in play.
Kids with a disability face a lot of barriers. For my daughter, who was born with Spina Bifida, it can be hard to figure out how to play with other kids because (1) she comes with equipment which is a physical barrier, and (2) she can’t run or climb as fast as others.
Usually, figuring out how to be included in play is left squarely on the shoulders of the child who has the disability (the one who is already trying to surpass so many additional obstacles vs. a typically developing child). This often results in the child playing by themselves, and missing out on the important lessons learned during free play and interaction with other kids.
I would love it if parents & teachers would work with all kids to help them figure out new and different ways of playing that are more inclusive. ALL kids (not just the ones with a disability) will benefit from learning these skills – it teaches kids to think critically, to be creative, and to build a resilient spirited approach to life. As with most things, when be figure out how to be inclusive, it benefits EVERYONE.
Lisa: What has been one or some of the greatest gifts of being a parent for you?
Amy: One of the greatest gifts I received is simply getting to BE a parent. It is a role I’ve always wanted to be in, but the path to get here was quite a bit longer than I expected. I was 30 years old when I finally met the right man for me, and then our road to becoming parents was bumpy and wrought with unexpected twists and turns. We eventually found our way to fertility treatments, and then to IVF, which finally (finally!) brought us Lily and Ben.
Now that I am a parent, the experience has given me so much. A few of the biggest gifts that come to mind are:
• Becoming a part of multiple communities that I would not have connected with otherwise.
• The joy from noticing & celebrating every little accomplishment.
• I found a strong passion for helping parents / children with disabilities.
• Laughing (so much)!
• Bursting love (especially when one of my kids leans over and whispers, out of the blue, “I love you Mommy.”)
Lisa: What is a life lesson you have learned from your children?
Amy: The most important life lesson I’ve learned is how important it is to build resilience within ourselves and within our kids.
Resilience is defined as: “the capacity to recover quickly from difficulties.” The tricky thing about resilience, though, is that in order to build it, we must fall down. We must be given the opportunity to fail. We must face tough times. And when we face these difficult things, we then have to practice getting back up and trying again. We have to practice recovering with grace. We have to practice looking back and learning from what we did before. We have to practice finding the positive in the experience of failure, and feeling pride in ourselves when we find ourselves back in fighting shape after going through such difficulty.
Sometimes, resilience means making a brave choice or accepting that what we thought we wanted isn’t really what is best for us. Sometimes it means pivoting and finding a different way. Sometimes it means looking for new and creative ways to solve the challenge facing us.
Lisa: What is a piece of advice you received that has impacted your life?
Amy: We received Lily’s diagnosis of Spina Bifida when I was 20 weeks pregnant. As we tried to process the diagnosis and all of the information flying at us, our thoughts turned to the drastic changes we we would need to make in our lives in order to take care of her. We started talking about selling our house and downsizing to something smaller, about one of us quitting our jobs to take care of her, and started considering moving back to Florida to be closer to family.
A couple weeks later we found ourselves sitting across from a developmental pediatrician at Cincinnati Children’s. As we talked, the conversation turned to what we needed to do to prepare for Lily’s arrival. When I asked if we should be trying to make an extreme life makeover in the few months we had before Lily was born, the doctor calmly said, “Why don’t you let her show you what she needs once she gets here?”
We talked for quite a while, and it felt like taking a breath for the first time in weeks. It was also the first time I’d thought about things through that lens – letting HER show US what she needs when the time comes. This advice continues to resonate today. Lily is now 5 years old and sometimes I find myself planning too far out – like thinking about whether she will go to college and what type of accommodations she’ll need if she does! When I start down this path, I remind myself of this advice, and reel myself back into the present.
Oh, and by the way … my husband and I both still work, and we did not sell our house or move to Florida. As it turned out, our ranch style house is perfectly suited to our needs!
Melissa Wants You To See Abilities
I have gotten to know Melissa these past few months through my work with the Cincinnati ReelAbilities Film Festival. She is a volunteer whose leadership and passion is greatly furthering the cause of our Festival whose goals are for people to change the way they perceive difference, to break down communication barriers, and to build a more welcoming, inclusive community.
I wanted to introduce Melissa to you and share some of her story.
Melissa graduated with honors from Wright State University with a Bachelor of Science in Business in 2000 and graduated in 2016 from the University of Phoenix with a Master of Information Systems. From being a career woman with Hewlett Packard Enterprises as an asset manager in the USPS Division to a single mother of her daughter, Claudia, she strives to reach the high goals she has set for herself. She never allows anyone to tell her she “can’t” do something; she figures out how to achieve it.
Spinal Muscular Atrophy, which has caused her to use a wheelchair for mobility, has also been a driving force for much of her volunteer work. In her free time, Melissa serves on the National Board of Directors for Cure SMA, assists her daughter’s school with administrative and fundraising tasks, assists her MDA office with Summer Camp, speaks at many events to advocate for the rights of people with disabilities. She is also the chair of the Accommodations Committee for the 2017 Cincinnati ReelAbilities Film Festival as well as a Film Reviewer.
Lisa: You are Ms. Wheelchair Ohio 2005 (MWO) and 3rd Runner Up Ms. Wheelchair America 2006. What has that experience meant to you and why is that Pageant important?
Melissa: Although I am no longer involved with the Ms. Wheelchair Ohio/America program, my time in the program was spent focused on helping other young girls and women with disabilities realize whatever dreams they have are in reach. I am a firm believer that the only limitations in life are the ones you place upon yourself. When I was MWO 2005 and ran the MWO program, I was an advocate of promoting the idea that these women were successfully living lives despite the need for a wheelchair for their day to day mobility. Society has a habit of seeing a person in a wheelchair as someone who cannot possibly be living a ‘normal’ life and that is something I wanted to change, even if just on a minor change, with the MWO program.
Lisa: You are so passionate about being involved with Cincinnati ReelAbilities. Why is the Festival important to you and why is it important that the community participate in and support it?
Melissa: When Susan Brownknight (executive director of LADD, Inc.) and Molly Lyons (LADD, Inc. director of development and external relations) first approached me about becoming involved in the ReelAbilities Festival, I was skeptical about becoming involved at first. Because I was so used to programs that were ‘feel good’ programs, I did not want to support another program that promoted the idea of able-bodied people doing ‘good’ for the disabled community and getting a pat on the back. To my surprise, they explained that ReelAbilities was actually the opposite of that so I was onboard.
The Festival itself and the message it promotes is important to me because mainstream media tends to promote the idea that people with disabilities need pity, are living lives not worth living, or are a drain on their families. For example, in the film/book ‘You Before Me’, the message was spread that death is better than living with a disability. The Cincinnati ReelAbilities Festival has films from all spectrums of disabilities and promotes people living their lives doing very ‘normal’ things despite having a disability. Now, don’t get me wrong, having a disability is challenging and even frustrating at times; however, I believe I can do anything I want to do, I just may need to do it differently.
Lisa: What is one of your greatest satisfactions of being a mother?
Melissa: My daughter is the sunshine of my life and I am thankful for her every day. Although I was unsure how a pregnancy would turn out, I knew I wanted to be a mother so I did everything possible to bring her into the world as healthy as possible. She ended up coming into the world 9 weeks early but you certainly couldn’t tell it today. She’s a happy, healthy, smart, sassy almost 10 year old and one of my greatest satisfactions is being able to watch her grow into a young lady while trying to teach her what she needs to know along the way. I love my career but my true, most rewarding job is raising my daughter and having her is the best decision I ever made.
Lisa: Who is someone who has great impacted your life and how?
Melissa: Being Catholic, my faith is extremely important to me and that faith was something instilled in me as a child from my Mother. She always taught me to have faith that God would see us through whatever challenge we were facing and, as an adult, I am very thankful to her for this. In fact, I am following her lead and raising my daughter with that same faith in God.
Lisa: What is an obstacle that you have overcome and how has that strengthened you?
Melissa: It is hard to choose one obstacle in my life that I have had to overcome because my whole life has been full of them. From teachers in school thinking that my mind didn’t work because my legs didn’t work to co-workers thinking I was given my job to fulfill a percentage of hiring obligation, my life has been a constant circle of proving myself to others. Although it can be exhausting at times, it has also taught me to just be who I am and do what I need to do regardless of what others may think of me. It has also given me patience to raise a very spirited, wonderful child.
Disability Does Not Define John
Through my work promoting the Cincinnati ReelAbilities Film Festival, I have gotten to know some pretty amazing people who have impacted me in very meaningful ways. Actor John Lawson is among them. I met and got to know John when I was promoting the 2015 Festival. He was a volunteer and a spokesperson with whom I spent a lot of time. Now living in the Los Angeles area for his acting, John is coming back to Cincinnati to join us next month as one of our 2017 Festival VIPs.
What I remember so much about my time with him two years ago was how John could make me laugh, but also, John is an incredible listener, an encourager and a leader. He went out of his way to let me know my work and contributions were valued, and he did that with everyone I saw him come in contact with. At our Film Festival, he spoke with eloquence and humor in spreading our message. He included people. He inspired not because he is someone who has a disability but because of who he is as a human being.
Below are two different posts John had written on his Facebook page awhile back (I am reprinting with his permission) about his story. Since they had some duplication, I cut out part of the second post. I hope that you will take a few minutes to read his words. They just may change the way you see and think about difference.
John Lawson’s Story (in his own words)
Feb 4, 2015
Wow, 28 years ago today February 4, 1987 is the day that I truly will never forget. I guess the cynical smart-ass side of me wants to write that I’ll never be able to forget for there is always someone coming up wanting to know how I lost my arms or who are very quick to remind me how “lucky” I am to be alive. I don’t know that I agree with their assessment of a measure of luck apportioned to me. I started playing the piano at age three, then began lessons at age four and studied classical piano for 17 straight years. At age 30, I had spent over half my life learning to play piano and now would spend the rest of my life without hands. That doesn’t sound very lucky.
I have been lucky to raise three wonderful, smart and somewhat “well adjusted” kids (hey I was their Dad) and had the very lucky chance to marry the love-of-my-life. Unluckily, the cancer won and I lost her too.
I spent five months of my life at the North Carolina Jaycee Burn Center in Chapel Hill North Carolina. My left hand and most of my arm below my elbow was amputated that day. My right hand was amputated above the wrist approximately one month later. As the burned skin debridement surgeries stopped and drugs wore off, I assumed a new role I never wanted to audition for as an upper extremity double amputee; a man with no hands left only to watch others play music.
While at the Burn Center, I received the best-specialized medical burn care from some of the world’s leading doctors and nurses. It was there that I decided to do my best to recover all aspects of my life. It was explained that losing limbs is similar to losing a loved one and you should experience the same emotions. While at the hospital, I never felt that I went through all the steps normally associated with a life changing experience such as my accident. If I did, I did them in my sleep, because from early on I realized I had to unconditionally accept my new role. I did find out, that since I never displayed the emotions expected, the psychiatrists that visited my room over the months noted in my chart that I was a “classic case of denial, and would suffer a catastrophic mental breakdown with in five years.”
Again, wow; twenty-eight years gone by and I’m still waiting for that mental breakdown. I think I would enjoy the time off.
Probably the most helpful wisdom I received after my amputations was by an unknown author, but passed on by my mother, “No one ever finds life worth living—you have to make it worth living.”
I am not special in the things I have done, with the conditions I have to deal with to do them. I could not control the circumstances that burned my body and resulted in the amputation of both my hands, but I can control what happens after the flesh has healed. I can control my attitude.
Early in my acting career, someone gave me a coffee mug with a saying printed on the outside, “Life is not a dress rehearsal.”
Those six words carry a powerful meaning. We only get to do this once and no matter what or where our stage, this is our one and only performance. I do not know what roles in life I will have to play in the years ahead, but I do know I will always chug along with the same attitude as the little blue engine pulling the long heavy train in the book read by my mother to me so many times as a child, “I think I can, I think I can, I think I can.”
Jan 10, 2017
I need to say I am not here to inspire you. I have lost count of strangers that approach me in public while grocery shopping or pumping gas to tell me that I am an inspiration. I guess they mean well, but to me they are just congratulating me for remembering to put on my pants before I left the house. There is nothing inspirational about pumping gas or grabbing a can of green beans off the shelf. You have been lied to about life with a disability.
Most people believe that because you have a disability that your life is worse; that being a person with a disability is a bad thing and that if you live with the disability, it makes you exceptional. Living with a disability is not a bad thing and it certainly doesn’t make you exceptional or inspirational.
Life as a person with disabilities can be difficult and we do have to overcome some things. But it’s not the things that you may think. It’s not the things to do with our bodies that we have to overcome. I believe that disability is caused by the way society is structured, rather than by a person’s impairment or difference. If society looks at ways of removing barriers that restrict life choices for people with disabilities, then disabled people can be independent and equal in society, with choice and control over their own lives. Of course I’m in a profession where the industry creates barriers that 95% of the work for characters with a disability are given to an able body actor. It’s these societal barriers of the industry that restrict the choices and control of my career.
So February 4, 2017 I will start using prosthetics for longer than I had my hands. Half of my life wearing hooks. Do they replace my hands? No, but they are a tool I’m forced to use for maintaining my independence in a society designed for able body people; a tool for me to pump gas or load my grocery cart. I’ve learned to use my prosthetics to best of my ability, so I know when people tell me “I’m an inspiration,” that they mean it as a compliment. I do understand that, but the reason it happens is because of this lie that’s been sold to the public that disability makes you exceptional and makes you inspirational. I’m sorry; but honestly, it doesn’t. I really believe that this propaganda that we’ve been sold is the greatest injustice and makes life hard for us.
Oh, and that quote about “the only disability in life is a bad attitude,” is total bullshit. It’s just not true. No amount of me smiling at a piano keyboard with a positive attitude will allow me to play as I used to touch the ivories with ten fingers.
I hope in my lifetime to live in a society where someone with a disability is not the exception, but just accepted as a norm. I hope to live in a society where a man stuffing a grocery cart is not an inspiration just because he is using prosthetics. I want to live in a society where we don’t have such low expectations of people with disabilities that we hire able body people to do jobs they are capable of performing. I hope in my lifetime to live in a society where we place value on genuine achievement by people with disabilities.
