So speaks Ken Capone, the third in our series of interviews with exceptional individuals with disabilities, how they view their own disabilities and how they welcome interactions with others.
Ken is nearing 50, but I don't think anyone has told him that. Ken is:
and he has served as director of the Cross Disability Rights Coalition.
V-LINC: What is a typical day in your life like?
KC: A typical day looks like any other working persons day, just with a little more help and having to depend on people more. I wake up about, get ready for work, eat and then leave. I have about a 30 minute ride to work. After work,I run errands if needed such as shopping, banking, getting gas. Etc. then I go home, eat dinner and then get ready for the next day.
V-LINC: how do you prefer to be approached?
KC: Just like anyone else. I like a person to come up to me, say hello and introduce themselves and give time to do the same.
V-LINC: Tell me a little about your disability
KC: Cerebral palsy or known as C P is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.
Sometimes I have a difficult time controlling my movements especially if I get nervous. This is why i keep my arms and hands behind my back, it helps me keep my balance and it cuts down on the involuntary movements. Cerebral palsy affects muscle control and coordination, so even simple Movements - like standing still - are difficult. Other vital functions that also involve motor skills and muscles - such as breathing, bladder and bowel control, eating, and learning - may also be affected when a Child has C P. Cerebral palsy does not get worse over time.
V-LINC: Is there anything people say or do in approaching you that bothers you?
KC: Really nothing, I am able to communicate with people in anyway possible and I think if people realize this then it would make it less scary for people to approach me. I think the more people I'am able to make contact with the more comfortable they will feel the next time they see me or another person with a disability.
V-LINC: What makes you uncomfortable? KC: When people stare a at me when I'm eating because I'm self conscious
about the way I eat.
V-LINC: What is particularly frustrating? KC: Being late to events because of having to rely on other people
V-LINC: What is offensive? KC: When people think I am stupid or I can't do anything for myself because I have a disability.
V-LINC: Tell us something about your background.
KC: I am grateful that my parents made the decision to raise me in the family with my 3 brothers and 2 sisters. My family tells me I was very self-determined and that I advocated for myself at a very early age.
I went to public schools throughout my school days - this was an accomplishment particularly before Individuals with Disabilities Education act was enacted. They wanted to segregate us and put the children with disabilities in a special school.
I graduated from high school in 1983. Then I attended Johns Hopkins computer training school, completed the coursework, and set my sites on getting a job in the computer field. This went on probably 5 years, going on interviews and being turned down for a job. Then I heard about a job through a friend, for a position with The Arc of Maryland to be a survey interviewer.
There were approximately 1400 individuals interviewed a year over 8 years regarding their quality of life. All the interviewers are people with developmental disabilities. The survey issues statewide findings and recommendations to The Developmental Disabilities Administration. That project led me into my involvement in self-advocacy groups which progressed into a co-director position that ultimately led to a director position for People On the Go today.
I spend most of my free time at Laurel park, which is a horse race track. Yes, I enjoy betting on the Ponies and hanging out with my track buddies. Some days are good and some days are not so good. I am friends with some of the trainers that run their horses there. I have also become friends with the gate crew that put the horses in the starting gate. I like doing other activities
as well, such as 4-wheeling with my brother, going to concerts with friends. I just got back from Nashville. I also enjoy traveling.
In 2009 I went to Australia to visit my oldest brother.
V-LINC: Have you noticed any significant changes in dealing with people, or how they deal with you over time?
KC: I think now because more people with disabilities are out in their community that people are more accepting. And the perception of the general public is changing. They see people with disabilities working, shopping and living in the community.
V-LINC: Who are your heroes?
KC: My parents and my family are my heros, without them believing in me and pushing me I would not be where I am today.
V-LINC: If there was a film made of your life, who would you like to portray Ken Capone?
KC: Nobody is as good looking as I am but George Clooney is close.
V-LINC: What are you most proud of?
KC: I think I am most proud of that I have a job where can educate people about disability issues and what is possible. I am also proud that I just bought a house and I live on my own.
V-LINC: What resources have been of help to you? Has the ADA been helpful to you?
KC: Very much so with communication devices such as my iPad, curb cuts, more accessibility in general, more accessible hotel rooms, the accommodations on flights, public awareness.
Here also is an article about advocacy in Annapolis, where is Ken Capone is mentioned and pictured (far right):
More than 30 Volunteers attended V-LINC's 4th Bike Clinic over the weekend. Ten children and their families were VERY HAPPY as a result of the work V-LINC volunteers did to create customized bikes and trikes for their children with disabilities. Gabby was one of 10 children who came with their families to get customized fittings for a new bike. Most left with their bike or trike. A few need further help. Gabby's parents hope she can build up the strength in her legs now.
Here is Bryce who was also with us for his new bike. He was anxiously awaiting his physical therapist and engineers to come and fit him on it!
Who I Am is of More Significance than any Disability I May Have
Dave injured his spinal cord in an accident when he was 30 years old, leaving him a quadriplegic with only partial use of one arm. His situation mandates that he spend the first half of each day making preparations for that day. Rising, bathing, dressing, eating and the daily chores of life can take several hours for someone with quadriplegia. That doesn't stop Dave, however.
Dave has worked extensively in both the government and private sectors, feeling the pressure of bureaucracy in government, and therefore preferring the business approach. A disability, considered severe by most, has not stopped him from him from completing successful projects with the Orioles, Port Discovery, and the Hippodrome Theatre. He applies a business approach to interpersonal relationships also. He says that first impressions count, and we make assumptions about others in sixty seconds, therefore, let's recognize this and just "get on with it!" Let's learn to think outside the box. Let's recognize that we are all people first, and no two people are the same, with or without disabilities. Let's judge each other as individuals. Regarding inclusion, Dave wants to be approached as the individual he is, and he’ll do the same with you.
Dave likes to "play a little poker once In a while," and uses poker as a metaphor. He says:
"Life is a poker game. You either play the cards you're dealt or throw in your hand.
David Ward is a practical man, and a model for anyone who becomes disabled. He believes that people with disabilities can take control of their lives, albeit in varying degrees. When asked, he advises "getting on with it." His own businesslike approach garners the best results for him. He says we must work with what we can do, with what we have, rather than concentrating on what we cannot do or don’t have. Dave considers himself as a person first, his disability has less significance.
He is known for this People First philosophy. We are people first, some of us just happen to have a disability. So never talk to Dave about a disabled person! A wheelchair with a man in it is not a wheelchair bound person, but a person who uses a wheel chair! These phrases recognize of the power of the individual.
Dave has long been an advocate of “Universal Design” for everyone's benefit, disabled and non- disabled alike. Not enough public services give enough consideration to patrons who have disabilities. With Dave's typical no nonsense good humor, he refers to the MTA as the "May Take Awhile Authority." His efforts to bring about lowered curbs at crossing has benefitted all sorts of people with temporary or permanent disabilities, the elderly, bicyclists, and deliverymen. Wider doorways and other modifications help people in wheelchairs, using walkers, including the large number of Baby Boomers who are now wishing for a one-story accessible home. Why not sure make everything is univerally designed to be as accessible as possible for everyone (a lesson learned and demonstrated by Apple). We can all have access when we need it with really good designs.
When he became disabled, he saw the need for strong advocacy within the disability community. And as a result of his keen observations, and willingness to engage with the issues, he has been instrumental in creating and leading many advocacy groups including becoming the first chairperson of the Maryland Commission on Disabilities.
Dave was involved in initiating the "curb cut," which refers to the depression on a curb providing easier transition from the sidewalk to the street, not only for those in wheelchairs, but also for bicyclists,delivery men, pedestrians with baby carriages, etc. He wants more people, from all communities to become involved, feeling involvement is the most successful approach to inclusion. He has always strived to have the disability community strengthened by recognizing common threads, rather than differences, and thus better able to build consensus.
Of his many accomplishments, Dave is proudest of his leadership in creating the Department of Disabilities in the state of Maryland. He was its first chairperson.
“Mommy, am I going to use a wheel chair when I grow up?"
Hearing that question from her four year old son is one of many unique experiences Terri Parrish has had since she was injured in an accident at age twenty-five.
The accident resulted in a spinal cord injury that left her paralyzed from the waist down. As a result, she faced and ultimately conquered serious physical challenges. Along the way, she realized that she might not be included in some former activities and gatherings because disabilities make people uncomfortable and because her wheel chair made access imperative.Access to buildings, restaurants, hotels, her friends' homes. Inclusion begins with the basics: physical access.
A former cheerleader, Terri focused on being confident, comfortable, and very approachable because she loves people and is very outgoing. She recognizes curiosity as natural, and meets questions head-on, especially from children who are famously curious and outspoken. People sometimes don't know what to do when talking to someone in a wheelchair. Terri says she often suggests that people who speak with her be seated, thus placing themselves at her eye level. This is more comfortable for her and it also saves her neck muscles (tip #2).
Terri identifies with what she has, not what she has lost. She regards her disability as one aspect of her very busy life: "My wheelchair is not a part of me, it is a part of my life" she tells V-LINC. She is a retired elementary school teacher, Sunday school teacher, activist, and mentor, Chairperson of the Baltimore County Commission on Disabilities, hospital volunteer, former cheerleader, and former Miss Wheelchair of Maryland. She is most proud of having raised her son and daughter in the knowledge that everyone is basically the same. Even though she had to break the news to her son that he would not be getting a wheel chair when he grows up.
V-LINC interviewed Terri Parrish as part of a series of articles on Approaching Inclusion: Step One toward a more Inclusive Society.
V-LINC loves making a difference in people's lives, so we were happy to receive a letter from the Savicks about the special chair and activity tray we had made for their son, Noah. Designed and created by a Woodlawn High School engineering class with support from our volunteer engineers, the chair has made a significant impact on the family. Noah wouldn't sit more than 3 mintues at the family dinner table in the past, but now he stays at the family table much longer. We will pass the Savick's letter on to our volunteers! One of the Woodlawn High students put a video showing the chair on youtube.
The Savick's Letter to V-LINC:
I am writing to thank you and the folks at V-LINC for your generosity in providing the funding and resources necessary to build a sensory chair for my son, Noah, so that he would be able to sit for longer periods of time at our family’s dinner table each evening. Due to sensory integration issues associated with his diagnosis of autism, and Noah’s constant need to be in motion, he has a difficult time sitting and/or standing still for more than a few minutes at a time. As a result, this makes for a challenging situation at the dinner table each night when our family makes an attempt to spend quality time together. Dinner usually looks more like a jack-in-the-box routine for us than a family of 6 sitting down, and enjoying uninterrupted time together over dinner.
Since receiving the sensory chair, funded through V-LINC [What I Wish for My Child program], and created by the students at Woodlawn High School, Noah now has a sensory table upon which to play with his built-in fidgets, a seat that moves back and forth with his body motion, and a strap to secure him if needed. Our family now enjoys dinner together for an average of 15-20 minutes in one sitting! This is amazing, and dinner has become a welcomed occasion as opposed to a stressful one.
Thank you so much for all that you, and the V-LINC team do for our special children. I can’t say enough great things about your organization, and the support that we feel as a family living with the challenges of autism on a daily basis. While we consider ourselves to be blessed by Noah’s diagnosis, we are certainly grateful for any invention that will make our lives less physically and/or emotionally stressful. Simple daily living routines that many people take for granted present us with huge obstacles in navigating life on a day-to-day basis. Please accept our heart-felt thanks for the creativity and ingenuity your organization brings to improving the quality of life for us and others living with similar challenges.
Stephanie and David Savick
Noah with his mom
UMBC, a V-LINC Partner School, creates devices for people with disabilities.Shown here are Dean Drake (V-LINC President), two UMBC student team members with their Instructor, Dr. Neil Rothman.
On Saturday, September 27th, 45 Volunteers arrived at the State of Maryland's Workforce & Technology Center (also home to V-LINC) to assembe bicycles for eleven special needs children. Engineers lead teams with a wide variety of skills and some with only their goodwill and the heart to help others! Also, occupational and physical therapists were on hand to help with the "fitting" of each bike with a child. Some children required back support, or changes in the positioning of the handle bars or bike seat. Some needed rear steering or breaks for parents to supervise their child while riding. A few children present would not have the best judgement about when to stop.
Here are some photos of the day. Also, volunteers from Northrop Grumman were on hand to tape the day - we hope to have some videos to share later.
Frannie and her dad with a PT and and OT Volunteers at work
V-LINC is holding a second 2014 Bike Clinic to help 8 or more special needs children by customizing a bike or trike to meet their individual needs. Children with disabilities have already been identified and evaluated for bike size and special adaptations needed.
Eleven children with disabilities will receive a safe, dreamy bike or trike! Help us fund the extra parts for the families that can't afford to cover part of the cost!
Click here: http://www.firstgiving.com/fundraiser/VLINCBikeClinic/v-lincbikeclinic
Courtney, below, really enjoys her large trike, even though she was scared at first.