An Essay by Dan Wilkins, Director of Special Projects
A Pavrent’s Words…
“Our son has almost no friends. He has no kids his age or otherwise to “hang out” with on a regular basis, to talk to, or to do things with socially. He is almost 16 and he spends most of his time with us, his parents, his 9-year-old sister, and his extended family. We are a very close family and I know he loves us and likes to hang out with us, but he has shared his feelings with us and we totally understand. We are painfully aware, as our son has told us repeatedly over the years and recently, that he feels totally isolated. He feels like people look at him and just see his disability. They do not take the time to talk to him and get to know him. He wants friends, a girlfriend, to have things to do, to go to college and live on his own, and have a family of his own someday. He has cried to us, even recently, about how lonely he feels socially. He feels he has no life outside of his family. It is heartbreaking to us and to him.” – An excerpt from a parent’s letter.
Everyone needs Community. Community needs everyone.
The Importance of Community
Just as everyone needs love and friendship and an opportunity to contribute, everyone needs community. We all need to know and believe that we belong to something bigger. Whether it is family, friends at work, church or the gym; the lady at the coffee shop that gives us our coffee and scone each day, it is comforting and healthy to be surrounded by people with whom we are familiar; whom we care about and who care about us.
The Importance of Everyone
Equally, no matter “who” you are, “how” you are or what you’ve been told, you are important. You have something unique to contribute. You have a talent, a skill, an interesting insight or story to share. Just by accessing and giving to the community, you bring a unique and necessary perspective to the social conversation, one based on your individual experiences: how you’ve gotten around and interacted with the world, what you’ve been taught and how you’ve been treated. Without you, your perspective and the contributions that you bring, the community is diminished. The Community, to be all it can be, needs you. It needs everyone.
Being “in” versus being “of” the Community
This all sounds great but there is a problem … and it has to do with whether or not one has the opportunity to truly and fully participate; to contribute. It has to do with the fundamental difference between being “in” the community and being “of” the community. Anyone can be “in” the community. We can go to the store, live in an apartment, attend school or church and be “in” the community, but still not be “of” the community. Being “of” the community is much more complicated. Unfortunately, it requires a status of “member” be “bestowed” upon the person or group by a majority of the community. It requires membership be recognized, validated and supported by law makers, educators, employers, public and social service, housing, and medical providers, by the various religious communities and by the general population.
Anything short of this broad acceptance, this whole new way of thinking, and we remain marginalized, perhaps “in” but not “of” community. We remain without a sense of belonging or “real” connection, no sense of equity. Without equity, without voice, we (and our communities) have less chance of developing wholly and healthily. Opportunities to participate become less possible and those left out can only struggle against continued marginalization.
The Struggle Against Marginalization and the Desire for Belonging
A National Organization on Disability/Harris Survey indicates that people with disabilities feel more isolated from their communities, participate in fewer community activities, and are less satisfied with their community participation than citizens without disabilities. In their writings, Derrick Dufresne and Al Condeluci each reference the impact loneliness has on us as individuals. Loneliness, and the isolation it brings, has been proven, through many studies, to contribute to sickness, even death. In her award-winning short story,
Cipher in the Snow, Jean Mizer wrote of an ostracized teen who collapsed and died in the snow after exiting a bus. It is ultimately determined he died from loneliness, from having no real friends in his life. The quote at the top of this page speaks to the loneliness of one young man in the northwest Ohio area and the concern of his mother. He is not alone in his situation. There are people like him and families like his all over the area and world.
Having access to others, to community, has been an elusive dream for many disabled people, especially for those with significant physical and cognitive differences. For as long as records have been kept, people living with disabilities have been regarded and treated differently. Like many marginalized groups of people, they have been feared, separated, isolated, mistreated, ridiculed, put on display and exploited, denied medical treatment, even killed … just for being different.
Often, disabled citizens are discounted quickly; unfairly dismissed as having nothing to bring to the community table. This happens because there exists a paradigm of low-expectation, based upon old or misguided information and deeply entrenched in our community psyche, that equates “disabled” with “unable”.
Think about when there is a moderate to heavy snow. Ever been to a parking lot after it is plowed? Where do nine out of ten snowplow drivers push the snow? Into the accessible parking spaces. Why they do this is no mystery. There is an assumption that the spots won’t be needed; that disabled people “don’t go out into bad weather”. This is no reflection, good or bad, on the plow drivers. It’s just the way people think, especially those with no “real, hands on” experience with people living with disabilities.
Because of this pervasive societal mindset, people living with disabilities are seen as “less than”; “less deserving” of place, of equity, of having a voice. Nothing could be further from the truth.
A History of Contribution
In reality, throughout history, there have been many contributions made by people living with disabilities toward where we are as a civilization. It is unfortunate that little attention has been paid to this aspect of history because, by its omission, we have perpetuated the myth of non-contribution. For example, when we were taught about people like Lincoln and Churchhill, Monet and Matisse, Edison and Einstein, more than likely we spent very little time, if any at all, discussing the impact their disabilities had on shaping their lives and influencing their contributions. Without exploration, we simply accept that there was something about them that set them apart, that led them to do what they did in the way that they did it.
We believe, quite probably, that it was the perspective on life gifted them by their disabilities that set them apart; that led them to write the way they wrote, paint the way they painted, compose the way they composed, lead the way they led.
To better understand the roles people living with disabilities can and have played in community and the importance of creating inclusive opportunities, try to imagine where we would be as a humanity without Homer or Socrates, without Keats, Milton or Shelley, without Mozart or Beethoven, or Newton or Franklin. Imagine no Hawking or St. Paul, Charles, Wonder or Bocelli; no Roosevelt, Keller or Tubman. And these are just a few famous names. There are hundreds more who’s names you would know and millions more unknown people living with disabilities, with gifts and talents to share if only we, as a society, as a true community, chose to open our eyes, minds and doors to what is possible.
Yes, everyone needs community … and community needs everyone.
So, Where We Are Now
There has been change. There is more and better access: more automatic doors, better access routes from parking to building, more attention to mobility and usability in stores, better bathrooms. There are audio loops in offices, theaters and performance centers; tactile menus, signage and artwork. There have been improvements in transportation: kneeling buses, accessible train cars, more aware and better trained support staff at airports.
True Inclusion in education has been spreading out slowly from tiny pockets here and there but, as most parents, educators and advocates would agree, has a long way to go. There are disabled people contributing in academia, politics, community service, the arts, theater, television and movies. There are writers of note, painters, musicians and vocal artists. With all of this, employment is still a problem. In a time when America is feeling the effects of an unemployment rate hovering around 10%, unemployment for disabled adults floats in the high 40 percentile.
With 70 million Baby Boomers reaching 55 and 60, Aging in Place continues to grow as a popular option; new housing is beginning to incorporate universal design and the concept of Visitability is being accepted by enlightened developers and municipalities alike.
The additional benefit of all of this access, all of these improvements to the community landscape, is this: these changes don’t just benefit people with disabilities, they benefit everyone. Everyone uses the curb-cuts, the automatic doors, the ramps. What many refer to as assistive technology, designed and intended for those living with various disabilities, in the end makes life easier for everyone.
Better access to community, as mentioned above, provides more opportunity for interaction, for disabled people to live, work and play within the community as a whole. More interaction leads to better understanding and less fear. People are connecting in natural ways, getting to know each other beyond obvious differences. Many are coming to see that living with disability is not a bad thing, just a different thing, and this change in awareness and attitude gives us the best opportunity to move forward, toward a more inclusive community.
Where We Are Going From Here: The Concept of Five-Star Quality
With all of this said, community participation represents the degree of connection a citizen has to his or her physical and social surroundings. As mentioned above, feeling one is a part “of a community” is not just important. It is vital. It is where life takes place. It is where people feel “at home.” Unfortunately, data show that people with disabilities, more than any other minority group, continue to be isolated and set apart from the greater society (A. Condeluci, Cultural Shifting, 2002). And, in most cases, it is nothing “real” about the person’s disability that causes this greater level of isolation and dissatisfaction. The most common barriers to community acceptance reported to Ability Center staff by individuals with disabilities and their family members are less-than-positive attitudes and low expectations (both based upon old myths and stereotypes, not upon anything real) among human service professionals, community professionals, community recreation providers and employers. There is no blame, no reason for negativity here. People act and react according to what they think they know.
If you have no real connection to disability; no history or experience, either personally or through acquaintance, how can you be expected to understand anything beyond what you have read in books, seen in movies or heard from others?
Helping to change attitudes, to create communities more inclusive in their thinking and design, more accessible and welcoming, is a big part of the mission of The Ability Center.
We believe, given real information and support, real answers to real questions, people will begin to consider disability in a different light, with greater respect and equity, and a higher expectation for what is possible. With this new awareness and the natural partnerships springing from newly formed open lines of communication, many of our community partners are redesigning their programs and places to best meet the needs of all citizens. The Ability Center role in these partnerships is to provide ongoing information and support.
Whether it is training for park volunteers, service providers or Leadership Toledo, or looking at blueprints for 5/3 Field and the Huntington Center, The Ability Center helps its partners consider issues important to citizens living with disabilities. The programs and efforts going forward, along with the responsibilities and staff necessary for those programs and efforts, are owned by the Community Partners. The Ability Center steps back, offering support as needed. We’re not on the marquee.
Our job, as the saying goes, “is to put ourselves out of a job.” When the community as a whole becomes aware of the need and ways to be most welcoming to all of its members, people with disabilities will no longer feel or be relegated to “special” programming held at and through disability-related organizations. It will all, from our perspective, be happening “out there”, in community, by and through the community. It happens outside of what Derrick Dufresne, of Community Resource Alliance calls the “Disability Bubble.” This is what we refer to as “Five Star” programming, happening in “Five Star” Communities.
You may also contact the Center at (419) 885-5733 or (866) 885-5733 (Toll-free) or email Dan Wilkins, Director of Special Projects.