V-LINC has lost one of its more energetic and dedicated volunteers, Dr. Andrew Conn, better known as Andy. Andy worked through a difficult and painful illness and left us finally on Friday, November 6, without losing more than two weeks of work at his fulltime V-LINC volunteer position. No one knew how ill Andy was and the courage it took to continue. He expected a great deal and he gave even more.
John Staehlin started working with Dr. Conn providing one VME project to the JHU Whiting School of Engineering's Senior Capstone Class each year. That was about 25 years ago! Andy Conn was the person responsible for creating and teaching that class for many years. When Andy left JHU, he declared that volunteering for V-LINC was his new full-time occupation. And he meant it.
For those of you who knew Andy, we share your sorrow. For those that never met Andy, we know you'll still appreciate his story of compassion and courage. I think it would be fair to say that Andy never saw a person with a disability, especially a child, that he didn't want to help.
We are sad to lose this skillful and compassionate man who contributed solutions to so many people with disabilities. We hope his family is comforted by knowing of all the lasting good he has done for many people with disabilities, especially all the special needs children who now have a bicycle because of Andy and his crew.
We could go on and on about all of Andy’s work, but a few pictures will say so much more perhaps.
He tackled everything from floating physical therapy chairs, to camera assists for camera lovers who have suffered strokes (with no use of their right clicking finger now) to all those custom bikes for children with special needs.
What I Wish for My Child is an annual program that offers families an opportunity to win a customized solution for their child with a disability! V-LINC engineers and engineering students design and fabricate these unique solutions.
Terrence’s Adaptive Lacrosse Stick (15-021W) - Terrence is a 14-year old wheelchair lacrosse player with cerebral palsy, seizures, and a history of hydrocephalus; but that does not stop him from being a team player. He plays for a team at the Northeast Regional Recreational Center in Parkville, MD and loves the game. Terrence communicates by gesturing and is fed by a G-tube. His coach sent in a wish for Terrence to have a better functioning adaptive lacrosse stick that will have a catapult appearance and usage. (Baltimore City resident- Idlewood neighborhood – 21239) - This project will be done by UMBC.
Nikita’s Dressing Device (15-028B-W) – Nikita, also known as “Nik”, is a rising 8th grade honor roll student. He attends Parkville Middle School. He was born in Russia with no arms and his right leg is 5.5” shorter than his left. All of his daily functions are done by his feet. As he moves into his teenage years, he is especially in need of more opportunities for independence at school and travelling. His wish is to be able to have a dressing device so that he can put on his school polo shirt without assistance. (Resident of Rosedale, MD) – This project has not been assigned yet.
Jenna’s Adaptive Float Pak (15-029W) – Jenna and her family love to swim. They have an above ground swimming pool in their backyard. However, Jenna has a challenge that limits her ability to swim for any length of time. She has Autism and a genetic disease called Methylmalonic Acidemia, which causes many complications including kidney failure and inflammation of the pancreas. It requires her to use a feeding pump 23 hours a day to stay hydrated and receive nutrients. For one hour a day, her mom is able to disconnect the tube. Jenna’s mom wishes for V-LINC to create a custom designed waterproof device that is compatible with her feeding tube that will not allow water to get inside of the pump. It needs to be floatable to prevent the alarm from sounding. Currently, her mom is using triple plastic bags as a makeshift solution and it limits the amount of swimming Jenna can do. (Baltimore City Resident – Canton - 21224) – This project will be done by UMBC.
Megan’s Adaptive Chair (15-030W) – Six-year old Megan has a very rare chromosome disorder – only 30 in the world have the condition, only in the USA). She is non-verbal and non-ambulatory with low muscle tone. When it’s time to eat a meal, Megan is required to sit in a special high chair that she has now outgrown and has been hard to find in her size and requirements. Megan’s family reached out to V-LINC to design a “cool-looking” high chair solution that will allow Megan to be safe, well positioned due to her low muscle tone, and to be able to eat with the family. She has a younger brother and stays with her grandparents afterschool. (Resident of Baltimore – Gardenville neighborhood - 21206) – This project will be done by CCBC- Essex.
Spencer’s Trailer Bike (15-039W) – Twelve-year old Spencer is a friendly young tween. He enjoys bike riding in his trailer bike with his family, but has outgrown the one he has. Finding another trailer bike that clamps onto his mom’s bike as well as fits his size and condition is a challenge, so the family turned to V-LINC for assistance. Spencer has cerebral palsy and is a quadriplegic. He has a twin brother and an older sister. (Resident of Ellicott City) – This project will be done by CCBC Catonsville.
Five year-old Assante has Achondroplasia (Dwarfism) so riding a bike is a struggle. His legs are not strong enough or long enough to pedal the usual way. V-LINC’s Designing Our Future through Technology program completed his request for a small bike he can power with his hands & arms through one of our school partners, UMBC.
Watch as Assante rides his custom made a bike for the first time! The bike was made by an engineering student team to fit his exact proportions. He and his family are delighted!
Allison's mom wanted her daughter, who has a a progressive genetic disorder that impacts the nerves that control her muscles, to ride a bike with her family. They all love bike riding, but Allison can't ride a bike on her own. V-LINC partner UMBC Mechanical Engineering, assign a student team to the project. They adapted a mom-sized 26" tandem bike and custom fit the back of the bike added a high back seat with a safety harness and handlebars for Allison. They included a kickstand so mom can strap her in without balancing the bike too. Allison can pedal when she wants or just go for a ride!
Here is the letter that Allison's mom sent to Angela at V-LINC:
We thank you all very much for allowing this priceless experience for her, while she is still able , to enjoy it. Allison’s disease is searchable through CureSMA.org, if information is needed.
The last day of Summer Camp! Deputy Secretary Bill Frank visited our Inclusive day camp today to learn how Maryland’s first Inclusive Camp gives extra support to build confidence and boost learning skills with all children. He watches one camper use her iPad to make a web site with her photo (above). Two campers from our first session of camp enjoy each other, below left.
Campers come in every size, shape, color, and ability. They are 7 to 14 years old and really enjoy their time with us. Camp Director Monica Planas had every minute of their day planned and sent parents the schedule before camp so that everyone could be prepared for their trip to Port Discovery, the Aquarium or bowling.
We were especially pleased that representatives of both the Maryland Department of Disabilities and The Harry and Jeanette Weinberg Foundation visited V-LINC’s camp this summer!
It's just different... Blind since birth,
Mike has no shortage of ideas about how he hopes people will approach him ... beginning with RELAX! And don't assume he needs help!
Mike is dedicated to promoting a new shared thinking about the meaning of disability for everyone. Do not make the assumption that someone with a disability is not in charge of his life. And don’t invade his space before making certain he has the opportunity to act or make a decision on his own.
Mike has always wanted to do something that would make fundamental change in how people with disabilities are perceived.
As a child, Mike never considered himself different, and he doesn't like being treated as though he cannot find his own way now. Like many people who are blind, especially if it has been since birth, Mike is very able and can find his way around anywhere pretty easily. If he wants help, he asks.
If you want to meet Mike, he hopes you'll simply begin a conversation about whatever you usually talk to a new person about. He is very familiar with his own disability and it truly doesn't interest him to discuss it with a stranger. Every person with a disability is unique, just like every other person.
One of Mike’s innovative ideas is his Disability Skills Gateway Program. He sees that millions of people are temporarily disabled each year and recover. They break hands, arms, and legs, have temporary back injuries, strokes, etc. All of these people need to see how others manage; how to carry groceries while using crutches, how to button a shirt with one hand, and so many other tasks. These things are performed routinely by the disabled community, and they could be the teachers, leading the temporarily disabled to complete these tasks with more ease and fluidity, allowing people with disabilities to educate others, including who have become permanently disabled. This would be a major step toward creating more people who can live independently and with dignity.
A futuristic thinker, Mike finds time along the way, to read several books weekly, listen to Ted Talks and Jon Stewart, study Anthony Bourdain...to name but a few of his interests.... and he bakes his own bread.
"Blindness has been good to me," he says, adding that it has helped him learn to treat all people with dignity and respect. Treat people with dignity and respect and they'll ask you if your help is needed.
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):