Fresh Faces, Fresh Voices

Photo by Michael Knudsen/Cramer Photography

An entire generation of American wheelchair users has grown up since the ADA became law. So that means everything’s better now, right?

Well, yes, in many ways. And, no, of course not.

Some old obstacles have just been exchanged for newer, less physical ones. Attitudinal barriers still restrict access to full participation in our culture. Regardless, the four twentysomethings we spoke with all say life is good, and will only get better. They’re all on Facebook, so look them up to continue the conversation.

A para since age 11 due to a tumor in his spinal cord, Adam Romanik, 29, is a busy man. Romanik’s schedule includes at least 40 hours a week at his job as an IT help desk team leader at Technasource. Add 15 hours for his own business, Computer Solutions for Less, and then about 30 to 40 a month as an officer in the Bonny Brook Riding Club. Then there’s the time involved taking care of five horses and also, until very recently, he handled all the IT for his church.

Why so busy? “I felt I was supposed to do these things, that I was called to do them, especially church and the riding club,” says Romanik, who lives in New Bloomfield, Pa. “I am just now unloading stuff. One of the things I’ve realized is I’ve done so much for so many people over the past three or four years that I’ve really deprived myself of me.”

Which doesn’t actually answer the question. But then Romanik begins to talk about how although he hasn’t had it rough because of his wheelchair — all his schools were comfortably accessible and he’s never had a problem getting a job — he feels compelled to show who he is, beyond his disability. So he invites people to go riding with him. “Horses show who and what I am, not just the wheelchair user, but the whole person. Riding is when I’m really me, when I don’t have to prove to anyone that I can be independent.”

Romanik says he’s never really been discriminated against: “Well, except sometimes by people I ask out on a date.” He typically meets prospective partners over the Internet. “When they find out about my disability, often they don’t even want to meet. So I don’t tell them ahead of time. Some flip out — ‘You should tell people,’ and ‘I just don’t feel comfortable.’ The disability image needs to change — this idea that disabled people can’t have sex, and so on.”

Although it’s painful to be rejected, Romanik recognizes it’s not personal. “People slighting me used to make me feel like I’m not worthy,” Romanik says. “Lately my attitude is more, ‘Too bad, your loss!”

*****

 

Christine Wilk

Christine Wilk

Christine Wilk, 28, says architectural barriers just aren’t as big a deal as attitudes. Like at the College of Dupage in Glen EIlyn, Ill., where she is a student, for example. The campus is fine, but Wilk, who has cerebral palsy, can’t get her teachers to understand she’s at the mercy of paratransit. “Sometimes it gets me there late, and the professors don’t want to hear it. They say they don’t have to accommodate me for lousy transportation. So I’m stuck saying, ‘What do you want me to do?’ The school’s accessible, but the professors are not.”

So … this is progress. Kind of.

There’s even progress on the crappy transportation front. Sure, ever-tardy paratransit shuts down at 5 p.m., but Wilk can roll to a train station and be in Chicago in less than an hour. Once there, she can hang out with friends, facilitate workshops for the disabled feminist group FRIDA, or meet the teen she’s mentoring through the M&M Roll Model program organized by the Rehab Institute of Chicago.

“Things are accessible now, we can get around and do things, but there’s still this barrier. I don’t know, it’s kind of like we still aren’t being treated like normal people,” Wilk says, explaining how even though physical barriers may be melting away, the interpersonal obstacles left behind are just as daunting.

Wilk doesn’t date much. “There is a certain etiquette that we miss out on, as people with disabilities,” she says. “I’ve had guys in wheelchairs come up to me and ask if I want to get married when they first meet me — that’s not the best way to get to know someone. They don’t know you have to take things step by step, and ask someone out on a date. I guess they don’t get the whole courtship thing.”

And forget nondisabled guys. “I can get them as friends but as far as dating, it’s really hard,” Wilk says. “I wish it weren’t like that, and one day it probably won’t be. People will become more educated and realize it’s OK to date us, it’s not something to be ashamed of … hopefully the attitudinal barriers will go away.”

*****

German Parodi, 25, a quad at the C6-7 level since age 17, says physical access most certainly is still the major issue facing power chair users. “Many places just have one step, but it keeps me out. And then some places are accessible, but the bathrooms aren’t,” says Parodi, who lives in Philadelphia. He heads up advocacy services at Liberty Resources for Independence and does organizing for rights groups like ADAPT.

Philly ADAPT is probably the most radical chapter in the nation, and its members are incredibly close-knit, so Parodi has a rich social life. “I hang out with a number of co-workers, and I like this place called the Locust Bar. It’s family oriented and I know people there, and then there are friends from the advocacy work I do from Philly. So we network and just hang out,” he says. “When you’re cool, you’re cool. It doesn’t matter what you have.”

German Parodi

German Parodi

Parodi lists other places that he frequents, and notes he has both nondisabled and disabled friends. Also, the city now is so accessible that Parodi can say this: “I’d like to go in some places, but they’re not accessible, and I will not spend my money on businesses that will not allow me inside.”

Parodi came to the mainland from Fajardo, Puerto Rico, in 2003, in large part for access. Although it’s a commonwealth of the United States, and thus subject to the ADA, the island still has problems. For example, Parodi couldn’t finish high school because he couldn’t physically get in, so he dropped out and picked up a GED.

But Parodi admits physical access isn’t everything. A proud Puerto Rican, he notes how few Hispanics end up in institutions. “We tend to keep our family members at home, which is a wonderful thing. But the tendency is to coop them up, not let them explore the community,” he says. “My grandmother tried to keep me in, but now I’m of age and go where I want to go. Other people should know we have that family-oriented ideal, which is good, but our families should strive to let go a little bit so we can have the same options as everyone else.”

Parodi’s life is full of choices, thanks to society becoming more accessible and his family letting go: “Tattoos and piercings, girls and work, drinking … I hope to be 50 and still doing all of this.”

*****

Life is good for Kara Sheridan Ayers, 29. Newly married, the Frankfort, Ky., woman is thinking about a family, and launching her career in clinical psychology. “My biggest thing is not physical access, it’s definitely the stigma and attitudes attached to what others think we can do,” says Ayers, who has osteogenesis imperfecta. “Society and professionals, whether colleagues or employers, are supportive of certain things I want to do in my career, like my writing, but if I want to work directly with children or adolescents, I encounter a lot more hesitancy and discrimination.”

Once, a supervisor actually told her to just stick to research. “I asked, ‘Am I terrible as a clinician?’ No, I was told, it would just be easier for me,” says Ayers. “For her it was a huge issue for me to work around kids with emotional disturbances. All of a sudden she was very protective, even though she didn’t know me.”

Kara Sheridan Ayers

Kara Sheridan Ayers

A newlywed, Ayers is thinking about babies these days. She and her husband both have OI, which means they’d most likely pass it on to their children. This bothers some people, especially parents of others with OI. “I try to address it with them, that their views send their children the message that, ‘We love you but we don’t want more people like you in the world.’ And some say, ‘Why would you go through all that trouble, just adopt.’ People are oblivious to how difficult it is for people with disabilities to adopt.”

Barriers to career goals and parenting are Ayers’ biggest access issues. But the little ones, too, can sting. “In the world people don’t make eye contact, and sit two or three chairs away from you. They quickly put together a plan to go to lunch and don’t invite you even though they invited two or three others,” she says. “Some people are not consciously aware they’re excluding us. It’s even harder when people building those walls don’t know they’re there.”

Ayers used to think being left out was something she could control. “A big difference between me at 29 and 20 is I used to think if I experienced people not grabbing coffee with me after class there was something I needed to do differently as a person, that the solution was within me. Now I realize it’s more of a systemic thing,” which is comforting. It’s not her, it’s society. It’s just another barrier that’s yet to fall.

Fresh Voices

What are they thinking? That is, inevitably, the question one generation asks of the next. What does the new generation care about, who are they, how will they change us and the world? To begin finding an answer, we gave three up-and-coming twentysomethings this assignment: Write about your passion. The results? Read on …

Beware the Helicopter Parents
By Allison Cameron Gray

It’s a lovely spring day in the park. Flowers bloom, birds chirp and a gentle breeze blows. A handsome man in his 20s, sitting in his wheelchair, is about to propose to the love of his life when suddenly he hears a machine roar over head. He looks up in horror to see his parents hovering above him. It’s the helicopter parents — he can’t escape them! They follow him everywhere. The man and the love of his life look at each other in despair.

Parents are naturally protective of their children, but when their child has a disability, some go overboard, earning the right to be named helicopter parents. I write about this because there seems to be a new phenomenon taking place — parents of young adults are refusing to let go.

Three friends I have had since elementary school have helicopter parents, and frankly, it’s putting a crimp in my social life. Let me share a recent example. My friend Stacy and I decided to go see a play and have dinner afterwards. We reserved the tickets and decided on a restaurant. The theater was on the opposite side of the intersection from the restaurant. Stacy’s disability is minor compared to mine, but her mother insisted we wait inside the theater until she came to drive us to the restaurant. Then she joined us for dinner. Not only was I insulted by this incident, I was mad at myself and my friend for not speaking up. To begin with, we are both over 18 and are reasonable, thinking adults.  Second, in her effort to “protect” her daughter — or both of us — this helicopter mom intruded on the evening. Now I’m not even sure if I want to make plans with Stacy anymore. Her mom’s interference killed the spontaneity and fun of a night out. So what if we use power wheelchairs? That just means we’d get away from a mugger faster!

Her helicopter mom puts a real strain on the friendship. I want to be an independent adult and start creating a life separate from my parents. Whereas, my friend would rather stick with the comfort of having her parents run her life.

So how do I create my own life when my friends don’t want to break away from their families? I ask myself this question a lot. There is no easy answer. I often feel like I’m dancing to a different beat than everybody else. It can be lonely. I want to confide in my friends, but I can’t because they don’t get it. I want to say to them, “You’re 20, you should know what you’re doing this weekend. You shouldn’t have to ask your parents.” It’s like my friends are still children. Don’t get me wrong, I love children as long as they’re young and small — just not big and college age. It also creates a strange dynamic in the relationship because I’ve had more life experiences than they’ve had. I often find myself explaining things to them that I assumed they already knew, like the need to have goals in life other than creating a cool new avatar character.

To return to the flying analogy I began with, our parents start out as the pilots, but we need to learn, as we get older, to tackle the stormy skies ourselves. Frankly, if my folks were helicopter parents, I’d hide the keys to the chopper!

Allison Cameron Gray, 20, attends college in Los Angeles. Gray, who has CP, writes screenplays and performs stand-up comedy at venues such as The Comedy Store. She also was an advice columnist for Kids On Wheels for three years.

*****

Dating a Disabled Self-Hater
By Aaron Broverman

I didn’t intend to join Dating4-Disabled.com. I’d never dated a disabled person before. I had yet to meet a person with a disability I was physically attracted to, and I always thought that by introducing a second disability into my life, I’d be compounding my own challenges. Still, I knew I couldn’t be a hypocrite forever, so it was time to finally open my heart to the possibility.

On paper (or in this case, “in profile”) she had a lot going for her, so much so that even without a picture, she was the main reason I joined the site at all. She’s Jewish, she’s into improv theatre and she feeds on celebrity culture. We had a lot in common, right down to cerebral palsy. My only non-negotiable when it came to the actual disability was that it couldn’t be mental. There needed to be equality in our intellectual capacities. I guess I forgot to factor in emotional capacities as well.

Taking advantage of our mutual interest in new and exciting culinary exploits, I selected a soul-food place less than a block from my apartment in the event things went incredibly well.

Wishful thinking.

Things start off great, we’re hitting it off and she’s getting more comfortable — maybe a little too comfortable:

“Do you ever wish you could be rid of this curse?”

“What?”

“The disability, don’t you hate it? Don’t you wish you were never born?”

I’ve been asked that question occasionally, but never on a date, and never by someone with the same disability.

I’ve always felt that God gave me a disability for a reason, whether as a blessing to others who needed to meet me in order to learn a lesson in their own lives, or as a teaching mechanism for how to live my own life in the best way possible.

My life has taught me that disability gives you life advantages that a nondisabled person may never learn. Disability forces remarkable improvisation, ingenuity and inventiveness. It constantly teaches you not to take life for granted and to savor every moment as if it is your last.

I’d take my current circumstances over the chance to be cured any day of the week, and that isn’t just illogical pride and defiance. As an adult though, my resolve is waning. When this girl asks me the question, outwardly, I give my usual positive response, but inwardly, I’m conflicted.

As a child with a disability, the world is your oyster. The support systems of rehabilitation and enriching activities are there to empower you in childhood. Countless charities are built around children with disabilities. This helps mold the child’s belief that people will always be there for them and that people are always following the golden rule.

The optimism and endless possibilities of childhood slowly started to erode for me as I began to recognize the majority of society acting not for the collective good, but for their own self-interest. Suddenly, something as simple as opening the door for me sometimes came with sighs, begrudging looks, and an implied subtext of, “Don’t say I never did anything for you.” All of this gradually darkened the light I had as a child; optimism turned into pessimism and my worldview became more and more cynical and negative.

For the last two years, I’ve been doing battle with these dark thoughts enough that I have moments of feeling the way this woman sitting across from me does. Sitting there, I saw the future’s harsh warning: If I ever committed to the darkness that I sometimes feel, I would become her. I would hate myself as much as she does. I would constantly sense those leering eyes seeing my disability and judging me for it:

“Does this make you uncomfortable?” she said.

“Does what?”

“The fact that we’re the only ones in here with disabilities.”

Did I want to condemn myself to her notion that having children with a disabled person would risk our child “catching” my disability?

No, I already saw where that poisonous thought pattern would get me. There’s nothing like seeing who you don’t want to be to show you who you really are.

I knew that if I continued seeing her, she’d fundamentally damage who I was completely, and there would be no going back.

In one sense, I mourn her potential, but in another I’m very thankful. I saw the end result of a road, I now realize more than ever, I never want to go down.

Aaron Broverman is a 23-year-old freelance journalist based in Toronto. He’s a frequent contributor to Abilities Magazine, and his work has appeared in various publications, including Financial Post Business Magazine, This Magazine and TV Week Magazine.

*****

Are We Ready for an Emergency?
By Kelly Rouba

In December 2006 I officially became Ms. Wheelchair New Jersey — a position I held proudly for 14 months. While I was my state’s titleholder, I was approached by Mary Goepfert, an instructor with the New Jersey Office of Emergency Management’s field training unit. She asked me to join the state’s Special Needs Advisory Panel, which tackles emergency management issues faced by people with disabilities.

My involvement with SNAP led to a job with FEMA as a disaster assistance employee, which in turn  led to a full-time position with EAD & Associates, an emergency management consultancy with expertise in disability issues. My recent work experience has made me realize that many people with disabilities are still unaware of the full scope of emergency management and the importance of being personally prepared for times of disaster. This is compounded by the fact that many emergency managers are understaffed and overworked, and so put issues like accessibility on the back burner until something drastic happens — or until people with disabilities demand action.

“Part of the reason we have been overlooked is the fault of many in the disability community,” says Chip Wilson, Florida’s statewide disability coordinator for emergency management and a paraplegic. “As a whole, we have been too silent in getting the message out that we are viable citizens who deserve and demand access to the same services as those without disabilities.”

According to Scott Ellis, emergency preparedness coordinator for the Progressive Center for Independent Living in Hamilton, N.J., some people with disabilities believe they are entitled to receive certain services, especially during times of disaster. “They feel that the government will take care of them during times of emergency or natural disaster, but they don’t realize that probably won’t happen.”

However, according to Wilson, there is progress. “This area is changing in large part due to activism and advocacy by and on the part of people with disabilities. Also, more of an emphasis is being placed on just doing the right thing by emergency management personnel.”

Elizabeth Davis, founder of EAD & Associates, longtime disability advocate and emergency manager, agrees. “I think we’ve seen a paradigm shift as people with disabilities are included, invited and incorporated into general society — one that’s more integrated; one that’s more open about issues,” Davis says. “Emergency management had to do the same kind of paradigm shift as the rest of society. The bottom line is to save lives, and that doesn’t mean only certain kinds of lives.”

Davis says quite a number of innovative programs and practices have recently been put in place to achieve this goal. For example, the National Organization on Disability’s Emergency Preparedness Initiative that was launched following 9/11. Also more Community Emergency Response Teams have been established across the country that include people with disabilities. Plus many senior centers are being designed so they can also be utilized as safe centers, especially in Florida and Alabama. When necessary, these centers transform into accessible safe shelter.

While emergency managers and the disability community continue to make more strides toward inclusive emergency management, we must remember it’s crucial for both groups to continue coming to the table in order to create and implement viable solutions for those issues that still need to be addressed.

“While we have come a long way in ensuring people with disabilities are not an afterthought in the emergency preparation processes, there is still a lot of work to do,” Wilson says. “Individuals must overcome their complacency when it comes to preparing for a disaster.”

For more information on how you can implement your own personal preparedness plan, visit www.ready.gov, www.eadassociates.com, or www.nemrc.net.  

Kelly Rouba, 29, has juvenile rheumatoid arthritis and recently authored a book called Juvenile Arthritis: The Ultimate Teen Guide.  Rouba is also a co-producer and advisory committee member of mobilewomen.org

Facebook Comments

Comments

Filed Under: CopingCover StoriesDisability CulturePeople

RSSComments (0)

Trackback URL

Comments are closed.