disability

Disability Does Not Define John

Share

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.

Actor John Lawson shares his story: disability does not define him.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.

 

 

What Disability Taught Kate

Share

I am so fortunate that my work allows me the opportunity to get to know some incredible people who are so passionate about their cause. Kate Lopez is definitely among them. She and I met when I coordinated the marketing/public relations for the 2015 Cincinnati ReelAbilities Film Festival organized by LADD, Inc. and we are working together again on the 2017 Festival. Kate is such a joy to be around. On a big event, with so many missing pieces, it is great to be working with someone like her who takes initiative and does what it takes to get the job done and done well. And with a smile on her face!  For this Festival, Kate is an instrumental member of our team and the amazing thing is she is doing it while living temporarily with her family in Nashville, Tennessee. She commutes back and forth frequently.

Kate Lopez is a volunteer with the Cincinnati ReelAbilities Film Festival. She talks about what having a disability has taught her.Something I didn’t realize until recently about Kate is that her passion for this work stems from her own disability. It was because of Krohn’s Disease that, at the age of 14, she underwent a 9 ½ hour surgery to remove her large intestine. It was the procedure that altered her life forever, not because of the loss of her organ, but because the over pressurization of her muscles from having her legs in one position for that long caused something called compartment syndrome. In other words, she lost most of the muscles in her lower legs.

For a teenage girl who was the star of her volleyball team, and an overall competitive athlete, that sudden change was not easy…even more so at such a sensitive period in a girl’s life.

“It was definitely identity changing but I had a supportive family and friends who gave me the power to turn my life into something,” she told me. “I wear braces most of the time but people don’t know I have a disability. I can’t run and be as active as I want to be but I try to do as much as I can.”

Below are Kate’s answers to my questions.

Lisa: Because of your early experience, you are now professionally helping others as you were helped.
Kate: I was a sophomore in high school when I began volunteering at the Drake Center, where I also participated in physical therapy. My parents didn’t think I would be able to drive again but I learned how to drive with hand controls at Drake Hospital. That combination of Drake’s impact on other people as well as my own life really is what influenced my career choice. I am a therapist now with a specialty in teaching people to drive with adaptations, if it is safe to drive. I want people to see that there is a way to live fully with a disability.

Lisa: What is a life lesson you learned from your surgery?
Kate: I learned life is more fragile than you think when you are a teenager but also that it isn’t just your body that can be strong. Your mind is what is stronger. It made me fierce in making me want to be independent and to make as much of a difference in the world as I can. I also learned that life doesn’t have to be what you expect. I keep learning that with each patient and each interaction.

It has made me more thankful for the people I have around me. I feel like I am not as alone as I may think because of my support system and that makes me want to be that support system for others. I don’t let anything hold me back – I travel extensively, I scuba dive and mountain climb. I do physical things, I just do them in an adaptive way now.

Lisa:  How did you become involved with ReelAbilities?
Kate: I went to the first Cincinnati ReelAbilities Film Festival, then co-chaired the Veterans Committee of the 2015 Film Festival. The stories just meant so much to me. I don’t think I’d want to stray from them, as it is a connection with others who share my same passion. One of the best things that happened from my involvement was when I was talking to a friend who has a daughter with Spina Bifida. She shared how someone came up to her at ReelAbilities and said she doesn’t recognize anybody. That was the biggest compliment of the Festival because it demonstrated that we are reaching people who are not normally sought.

Lisa:  You have define disability differently. Can you explain?
Kate:  To me, I see a disability as something that would limit an aspect of life. An impairment, however, is something that is different and something is not working as well. Disability impacts your participating in life. Sometimes I am just in the impairment phase. One of the biggest things about wearing braces is finding shoes that I like but I’ve got it down to a science to find shoes I like and adapt them and make it work. I will not let the impairment get in the way.

Lisa: You have a seven year old son. What do you teach im about disabilities?
Kate: My son is around a lot of people with disabilities through my work, experience, and friends. I try to lead by example and don’t make difference as noticeable. He calls my braces my shoes. He just thinks some people have differences and others don’t. When it comes to kids struggling, I teach him to be more helpful and patient. When it comes to physical difference, I’m not sure he even notices. I just make it part of the package of the real world. We really are all the same on the inside and that is what matters most.

 

Absolutely, Kate, that IS what matters most!

 

 

For Jeff Stone, It Is More Than A Job

Share

I’d like to introduce you to Jeff Stone, a direct care professional for Stepping Stones, a Cincinnati nonprofit whose mission is mission is to increase independence, improve lives and promote inclusion for children and adults with disabilities. Jeff began working at Stepping Stones as a summer camp counselor in 2012, and quickly added more responsibilities before joining their team as a full-time direct care professional at in 2014.

Jeff Stone is a direct care professional at Cincinnati nonprofit, Stepping StonesEach year the organization honors one of its employees who exemplifies its mission, and Jeff was this year’s recipient.

These are some of things his co-workers had to say about him.

“One only has to work with him for one day and you’ll see the care he puts into his second family at Stepping Stones.”

“This job is so much more than a job to him. His passion is inspiring and I love working with him.”

“He is one of the most selfless, compassionate and dedicated staff I’ve ever had the privilege to work with.”

Let’s get to know more about him.

 

Lisa: Please tell us about your job, what you do as a direct care professional, how long you have been at Stepping Stones, and what you enjoy most about your job?
Jeff: I have been with Stepping Stones for about four years. I started as a unit counselor at Camp Given in 2012 and have worked several Saturday Kids Clubs and Young Adult Clubs throughout the Fall and Winter. This is my third year at our UCP Campus as a direct care professional. One of the best things about being a DCP is understanding how rewarding it is to be in this field. At Stepping Stones we help individuals find pathways to independence. We offer several activities here for the participants such as, Art, Recreation, Continuing Knowledge, Technology (Computer Lab), Sensory, Life Skills, and Employment Exploration for those who are interested in finding a job some day. I also offer assistance with personal care (feeding, toileting).

I love my job because every day is different and I learn something new. There are many amazing people here, staff and participants and I have made some great friends. I love seeing the participants every day and having fun. I love making them laugh and making their day better. And I especially love making a difference in people’s lives.

Lisa: Tell us about Fred (pictured with you) and your relationship with him.
Jeff: I would have to say that Fred is one of my best friends. He is such a funny person and is loved by so many. We always have a great time together every day because we make each other laugh. Fred is extremely smart and always cares about the other participants. He is always wanting to help me throughout the day and even letting me know if I miss something. He is very observant. Another thing I admire about Fred is his patience. Even when I am having a rough day, he understands and is always trying to make me feel better. If I need him to wait for a little bit, he will and not complain about it. Being with Fred for quite some time, I’ve noticed that he loves art. He will sit and paint if I give him a canvas using several different colors. Fred also loves nature, especially birds. I can relate that to him because my mom was a birdwatcher and has shared with me her experiences and knowledge of birding. I can show him a picture of a Cardinal and he will know what that is. Fred even just finished painting his very own birdhouse not too long ago. I know for a fact though that one of Fred’s favorite things to do is laugh because you can always hear it no matter where you are in the building.

Lisa: How have you grown as a person as a result of the people whom you work with?
Jeff: The people I work with bring a whole new view on those with disabilities. A long time ago where I didn’t understand someone having a disability, I would try and avoid them because I had no idea how to approach them. My parents had to tell me that they were “special” because they also did not know how else to explain it to me when I was that young. Today, I can tell anybody that individuals with disabilities are people just like us. Maybe some of them might need our assistance in doing some things but they have rights too and should never be denied doing something they enjoy. I honestly feel like a whole new person due to my job and also feel like a better person too. I have a lot more patience, I understand situations and views better, and respect those other people who work with individuals with disabilities.

Lisa: What is a piece of advice or words of wisdom that you have received that has stuck with you?
Jeff: One of the most important things that has stuck with me is “CCF” or Campers Come First. In this case now it is “PCF” or  Participants Come First. We should always try to help them first and not think about ourselves, even when we are doing something we don’t want to do. If we are watching a movie, a staff member should not pick something that they want to see only because they like it. The staff and participants should communicate and agree on what movie to watch. If a staff member has a rough day and they just do not feel like being there one day, they can do several things to calm them down (take deep breaths, take a 5 minute break, exercise after work). Staff should always remember that they should make sure the participants have a good day because it’s for them. We assist them, make friends, and should work to know them better every day.

Lisa: Who is someone who has been an influence in your life and how?
Jeff: I have met so many people and have made so many friends here at Stepping Stones. There have been several people who been an influence in my life but someone who has always stood by me no matter what is Amanda Kay. She was my boss back when I was a part of summer camp and is my boss now here at Stepping Stones/UCP. Amanda has a love for the people she works with and has helped me get to where I am today. She messaged me out of the blue asking if I wanted to interview for a job at the adult program in Norwood because I was recommended by several people. I’m really glad I did and got a job here. I can definitely call her a fantastic boss, a role model for others, and a friend.

Lisa: Outside of work, what are some of your simple pleasures?
Jeff: I love the city of Cincinnati even though my heart will always be in Cleveland (GO CAVS!!). I love going out with friends downtown and Newport, going to concerts, bowling, going Reds, Bengals, Cavs, Indians, and Browns games, kayaking, hiking seeing movies, checking out new breweries, playing basketball and football, and just being with my family. I just enjoy living life and having fun with those who I am close to.

sponsors

Lisa Desatnik Public Relations in Cincinnati

So Much PETential dog training and behavior consulting by Cincinnati certified dog trainer, Lisa Desatnik

 

Marlee Matlin, Danny Woodburn And Others Celebrate ReelAbilities

Share

I have always been a fan of the popular NBC sitcom, Seinfeld. And some of my favorite episodes involved the volatile, quirky character of Mickey Abbott (Kramer’s friend) played by actor Danny Woodburn.

It was through my work with the Inclusion Network many years ago that I got to know a different side of Danny, a deep, passionate, caring and loving man who is not afraid to stand up for what he believes in. And, one thing he believes in is the equality, inclusion and dignity of those who have differences. Please click here to read an article about him and his role in Mirror, Mirror in the Wall Street Journal.

I hired Danny to speak at our Inclusion Leadership Awards Event, and I’ll never forget that more than 900 people attended to hear him speak while a blizzard was making roadways dangerously treacherous outside. Danny received a standing ovation that night and as he looked out into the crowd of cheering voices, he told us with a tear in his eye, “Even thought every script is a battle to see how much I’ll compromise, it’s worth it as long as there’s dialogue,” adding, “It’s inspiring to me as I look out at all your faces and see that there are comrades in this battlefield.”

It should be no surprise that I’ve stayed in touch with Danny. He is a friend and role model to me in so many ways. And how absolutely exciting it was for me to get an email from him this past summer telling me he is coming to town for the Cincinnati ReelAbilities Film Festival, for whom I am proudly now director of public relations. I can hardly wait to see him and his wife, Amy, and share his message once again with our great city.

Danny won’t be the only television and film celebrity joining us.

Oscar and Golden Globe Award Winning Actress Marlee Matlin heads a list of big screen stars coming to Cincinnati February 27 to help celebrate our region’s largest film festival, the Cincinnati ReelAbilities Film Festival organized by Living Arrangements for the Developmentally Disabled (LADD), and presented by Macy’s. We are expecting to attract thousands through world class film and speaking events and celebrates our community’s diversity and shared humanity.

Marlee Matlin coming to the Cincinnati ReelAbilities Film Festival

Marlee Matlin

Marlee, currently starring in ABC’s Switched at Birth, will be the key note speaker for the ReelAbilities Awards Premiere Luncheon.

Additional stars to participate in the Festival events are Justin LeBlanc, popular finalist on Project Runway Season 12, and current contestant in Project Runway All Stars Season 4; Daryl Chill Mitchell, who starred in the FOX sitcom Brothers with NY Giants football player Michael Strahan and currently can be seen on CBS’ NCIS New Orleans; and Kurt Yaeger, whose many film credits include Dolphin Tale and War Flowers, and whose most recent television role is as the fan favorite character on FX’s hit show Sons of Anarachy.

The Festival hashtags are #DifferentLikeYou and #CincyRA.

 

4 Paws for Ability Trains Service Dogs And BFFs For Kids

Share

I’d like to introduce you to Evan Moss and Mindy. At 8, Evan is the brown-haired, bright-eyed who likes to run, play electronic games, laugh, and <img src="Evan Moss.jpg" alt="Evan Moss and service dog from 4 Paws for Ability">write. Mindy is the blond, curly-haired golden doodle who was born into this world to spread love…and save a life.

In 11 days time at 4 Paws for Ability, they became BFFs (best friends forever) sharing a common purpose of ensuring that one little boy with a golden heart can ultimately grow into a caring, accomplished adult.

Let me explain.

Evan was born with tuberous sclerosis complex (TSC) which causes tumors to grow within his vital organs – mostly in his brain, eyes, heart, skin, kidneys and lungs. His first seizure came when he was just a few weeks old. Not long after, doctors needed to remove a tumor from his brain.

Now Evan has night time seizures about 10 days, happening mostly while he sleeps. Most of the time medical attention is necessary. I’m sure you can imagine the stress that has given his parents, and insomnia many nights.

Now they all have relief knowing Evan now has a four-legged friend who can recognize the signs of seizures and make sure he is safe.

Mindy is a 4 Paws for Ability Dog

Located in Xenia, Ohio, 4 Paws for Ability is a wonderful nonprofit organization that provides service dogs to children with a variety of disabilities and to veterans from recent conflicts who have lost use of their limbs or hearing during combat.

Their high success rate of raising dogs for service work is attributable to many factors including that the majority of animals in the program are bred at their facility. 4 Paws also trains with positive reinforcement strategies. I love that they have partnerships with a number of area correctional facilities where inmates earn the privilege to do something positive by way of being a trainer.<img src="Evan Moss.jpg" alt="Evan Moss and service dog from 4 Paws for Ability">

Evan, the top selling author

One of the requirements of 4 Paws with its applicants is that they submit a drawing or essay. Evan wrote a book.

What came next was something no one predicted. The media caught wind of what Evan had done. Feature stories led to long lines wherever Evan held book signings. His book, “My Seizure Dog” sold about 4,000 copies, was the No. 1 best seller on Amazon.com’s ‘Kids Health’ section, and was featured on Amazon’s homepage. Now there is even a Kindle version.

But the best part was, Evan raised the entire $13,000 cost of having a new BFF and a new lease on life.

To read the full story on Evan and others who have benefited from 4 Paws for Ability, please visit their blog.

Photo credit:  Jessica Noll, community/media relations director for 4 Paws for Ability.

 

 

Related Posts Plugin for WordPress, Blogger...
Follow on Bloglovin

Don't miss hearing about Good Things! Register to receive my enewsletters.

* indicates required
Archives