Managing Expectations for Relationships

By: Meredith Ritchie

It is February, the month of love, romance and sexy fun.  For people who are not in relationships, but want to be, February is a month of frustration.

Relationships are seen as the solution to lots of problems; people think that if they were only in a relationship everything would be wonderful.  This is a myth that our media culture loves to perpetuate.  Now nearly everyone, at one point or another has these feelings; people with disabilities can find themselves at a stronger disadvantage.  Part of the issue is isolation, not going or not being able to go out to meet people.  Once you get out of house and start meeting people then what do you do; what are some of the guidelines for relationships.

You have to manage your expectations for (and in) relationships.  This does not mean you have to lower your standards or give up your dreams.  What it means is there is huge advantage in being realistic.    So here are some suggestions for those looking for relationships and those trying to maintain the ones they are in currently.

“Getting a date”

1.) Don’t think that a relationship will solve all (or even some) of your problems.  We are bombarded with the message that all you need to be happy is someone else.  How many movies are there with unhappy people until they meet the “One” and their world turns around.  How many songs, books, plays etc. are there about how “love conquers all” and  “being empty till meeting you”?  Too many to count, and if you think that a relationship will fix every sadness, loneliness, whatever-ness inside of you; you are in for a shock.

2.) No matter what people like to claim, we are all products of the society we are raised in.  No one is completely immune to the influence of those around them.  So think about where your idea of what a relationship is and is not comes from.  Think about real world examples, family, and friends.  Don’t base everything on what you see on television.  I am not saying that you can’t use them as good reference points or to get ideas.   Just keep in mind that what you are seeing is not real, not even reality T.V. (especially reality T.V.)

3.) Don’t go out hunting for a date.  If you go out with a goal of “I am going to meet someone and we are going get together” it is highly unlikely that you will meet someone.  What is likely to happen is you will get discouraged and saddened.  This is counter-productive to building relationships.  The old wisdom about finding something as soon as you stop looking is somewhat true.

4.) Keep in mind what is important to you.  What are your values?  Look for people who share similar values.  Don’t feel that you have to change who you because “it is the only way you will get someone”.   If someone wants you to give up your values so that they feel better being with you, look for someone else.

5.) Don’t discount the idea of finding someone in an unlikely place.  You don’t have to limit your relationship seeking to bars, dating websites, singles cruises, or whatever other place people traditionally look for relationships.  If you discount an entire group of people you may miss out on a truly awesome person.  This is something the disability community knows all too well.  “I would never date a sighted person,” says a blind guy, not knowing if the next sighted person could be the love of his life.  “I don’t ever want to date another person with a disability,” says the woman using a wheelchair, automatically shutting out some awesome people.   The same principle applies to a lot of groups.  The “I will never date . . .fat, Black, White, tall, disabled people, gamers, nerds, jocks, atheists, people on the internet, people who don’t use cell phones . . . whatever.”  Only limits you and you never know someone until you start to talk to them.  If you won’t get to that first step, then you will never know.

heart

So there are five pieces of advice for those of you who want to be in a relationship.    Feel free to use them, or feel free to ignore them.  Some of them may not work for you; some of them may not apply to you.  However they won’t hurt to try.

 

 

 

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Housing and Disability

Kathryn Wallace

As an Independent Living Specialist, part of my job is to have Information and Referral sessions with consumers. During these sessions, the consumer talks about an issue they are having at the moment, and are seeking some resources to help solve the issue that they might be having.

The most common reason people call for is affordable, accessible housing. We have consumers that call in, asking for housing to accommodate for a wheelchair or a walker on a regular basis. Consumers that are asking for accessible housing usually ask for a unit that has a flat entrance, an elevator or wide doorways/hallways.

Unfortunately, the issue is, there isn’t enough affordable, accessible housing. If there was accessible housing, typically it’s units available in senior housing apartments. Most of the time, the consumers that I speak to are uneasy with the idea of moving into senior housing, just to gain access to a flat entrance or an elevator. This is completely understandable, especially if the consumer is someone who is in their 30s or 40s and doesn’t want to be the youngest person in the entire building.

When there is affordable, accessible housing for people who are under the age of 62, there often comes a waiting list. This waitlist can span from a couple of months to a couple of years, depending on demand and who is on the list. I always recommend to my consumers to not be discouraged if they see or hear the word “waitlist.” I recommend to consumers to place themselves on the waitlist, and to check-in periodically. It’s always better to be on a list, then to not. Also, I have found that sometimes the waitlist may not be updated regularly, so it still helps to contact the realty company of the property.

 

General Tips for Finding Accessible, Affordable Housing

I like to go over housing options with consumers, because one of the biggest rules when it comes to finding accessible housing is to be flexible. Often times, I would have to ask my consumers to consider moving to other parts of the county/city. If there are little to no accessible units that are available in an idealistic zipcode, and the ones that are available have a long waitlist, then I really encourage people to reconsider their area.

One of the housing options that I like to educate consumers on is homesharing, that is, living and renting a room in someone else’s home, and be in a “roommate situation.” Often times, as soon as mention the word “homeshare”, consumers immediately say “no” and insist on living in their own place. Unfortunately “homeshare” may come with a bad reputation for being in a living situation where there just isn’t any compatibility with a roommate. Homesharing should be a consideration for people who want affordable housing, and sometimes, these units may have accessibility depending on the needs of the person. When you share a home with someone it can really cut down on rent and utility expenses, and make your ideal area to live, more of a reality.

I use an online database that is available for everyone, which is mdhousingsearch.org. This website provides a listing of potential affordable housing available in Maryland. There is also a separate listing for potential apartments that have accessible features, such as elevators, minimal steps, roll-in bathrooms and grab bars. Again, usually the accessible searches that I perform come up with senior housing, which many of these units only allow people who are aged 62 and over. However, I would suggest searching under the “eligible disabled” category. Some senior housing complexes offer units that are available for younger people with disabilities. Some accessible apartment/townhome units can also be found, and may not be senior housing, but it would depend on what the consumer needs.

 

Housing Choice Voucher Program (Section 8)

I wanted to do some research on local affordable housing in our service area for Baltimore County, Baltimore City and Harford County. Recently, there was a case in which the Baltimore County Government voted against the development of affordable homes that would accept the section 8 housing choice voucher. This vote would not allow funding for Homes for America, a non-profit affordable housing organization, to build several units in the Rosedale area. Allegedly, this proposal was turned down because there was negative feedback from the community. The community had concerns that adding voucher-approved homes would cause an increase in the amount of crime, as well as crowding schools. (source: Baltimore Sun) It’s really sad that there continues to be a strong stigma against voucher holders.

There is a new campaign that recently started to try to remove the stigma associated with having a housing choice voucher. The Consider the Person campaign aims at increasing awareness of the housing voucher system and the people who hold these vouchers. The website contains general information on the housing voucher, local news related to the HCV, and personal accounts from people who hold vouchers. This would help the general public understand that just because an individual or family possess a voucher, does not mean that there is an increased amount of crime or disturbance in the neighborhood. (Source: Consider the Person)

It is a myth that people who hold a voucher are going to increase the level of crime and disturbance in a neighborhood. This is simply untrue, especially because most voucher holders know that if they do commit crime or disturbances, their voucher privileges are in danger. Once an individual loses their voucher, their voucher may never come back. There have been reports about disturbances or property damage in the neighborhood, and often times the perpetrators that commit these crimes are often assumed to be voucher holders. However, only a very small amount of these perpetrators are people who actually hold a voucher.  (Source: Consider the Person)

I’ve been to meetings where the topic is creating affordable housing, but there just isn’t enough advocacy for affordable, accessible housing. I’m hoping that, eventually, there will be more advocacy from the community to provide accessible housing. I encourage people who want more affordable, accessible housing to attend local public meetings about housing and let your voice be heard.

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WHY AM I A CIL DIRECTOR?

Michael Bullis

I became the Executive Director of the newly created Center for Independent Living (CIL) for the Baltimore Metro area in December of 2010.  No phones, no desks, no office, no employees.

Many people have asked me why I gave up a good State job that paid more, had retirement and job security, to run a CIL?

It’s a fair question that deserves a thoughtful answer.

For most of my career I have been frustrated by being in an environment where mostly nondisabled professionals were in charge of service delivery to people with disabilities.  Although I spent much of my career in private business, I also worked as a contractor and an employee of many disability agencies.  I always felt like I was speaking a different language than they were.  They used the words of inclusion and empowerment and said disabled instead of handicapped, mobility impaired instead of crippled, Etc., but had no concept, at their core, what the heck they were talking about.  Mostly they were people who wanted to provide care, but not “empower.” Their university training gave them a degree but no real sense of how to engage in a collaborative process with people who had disabilities.

Since these professionals aren’t helped to understand, at a feeling level, the experience of disability, they teach skills, when the real core of disability is not about skills, but about belief in one’s self.  Knowing how to do something doesn’t mean you believe you can do it as well as a nondisabled person.  Knowing how to cook doesn’t mean you see yourself cooking in a restaurant or cooking for your kids.   Seeing somebody with your disability doesn’t mean you believe you too can do it.  The few competent people with disabilities that the agency knew were the exception rather than the rule and agencies didn’t believe that the exceptions would, or could, ever become the rule!  In few agencies were competent people with disabilities ever in charge and even if they became directors or program managers, they weren’t given the power to make real change in the agencies fundamental approach.  In most State programs, the staff you have are the staff you have, and that’s that!

In the agencies I worked in, (and it’s still mostly true today), when tables needed to be moved, the nondisabled people moved them.  When the food needed to be cooked, the nondisabled people cooked it.  It’s easier, it’s faster, it’s simpler.  And, often, we didn’t know how to do it as well as the nondisabled, so, who were we to disagree.  Simply by virtue of being disabled, we didn’t have all the answers.  The fundamental point is that rather than creating an environment of exploration and new understandings, we simply perpetuated a lot of the old ones with a little improvement around the edges.

A CIL is fundamentally different than anything I’ve ever done accept for grass roots activities with the National Federation of the Blind (NFB).  The National Federation of the Blind is a national civil rights organization run by the blind.  When I joined NFB in the 70’s, it was transformational.  In an NFB activity there was no over-helping.  Tables needed to be moved–blind people moved them.  Food needed prepared–blind people prepared it.  It was just a different world than the one I was used to.  The expectations were high and competency was assumed.  And, I suddenly realized that some people, whether blind or sighted, really “got it.”  I found myself relaxing in ways that I never had before, because I wasn’t always trying to figure out how to deal with the attitudes of those around me.

So, for me, when the idea of running a CIL came up, it was a choice.  I could either keep working in environments where, at best, I was a small minority, or, I could finally be part of an environment in which people with disabilities were in charge of their future, with all that that implies.  In a CIL, we, people with disabilities and those without disabilities who join us,  will either make it or we won’t, but we won’t be able to blame anyone for failure but ourselves.

Lest anyone think we’ve created the perfect environment, I would say that maintaining the CIL environment is challenging.  Like the general population, we have absorbed the attitudes of others about our own disabilities and the disabilities of others.  Just because I understand the experience of being blind doesn’t mean that I can easily transfer that experience over to being hearing impaired or in a wheelchair.  I can easily, if I’m not careful, over-help or make unwarranted assumptions.  The CIL environment is an on-going conversation about the possibilities of disability rather than the limitations.  The challenge for a CIL is to keep this conversation and learning environment going so the misunderstandings can be recognized.  Otherwise we can become part of the problem rather than the solution.

When the staffs of a CIL are mostly competent people with disabilities who understand the pains, challenges and joys of disability, the air just tastes different.  Everybody, disabled and nondisabled, comes with a set of shared experiences that make a CIL truly different from most agencies.  In part it is that they understand the pain of daily discrimination and lack of inclusion.  They understand being regarded as less than an optimal parent, lover, father or mother.  They understand the pitying looks and the attempts to hide them.  They understand when they’re being used as a token to “show off” the person with a disability.  They understand that “being amazing” isn’t really a compliment.  What it means is that, “You’re normal, doing normal things, and I expected you to be incompetent, so when you do normal things, you’re amazing!”

When we send out job announcements we ask people to answer a question: “Describe a life crisis, major obstacle or personal limitation you have faced and how you managed it.  If there are teachable lessons others can learn from your experience, how would you teach them?

We’re looking for people who know the pain of being different, experiencing loss and overcoming personal limitation.  People without disabilities who have managed crisis in their lives make wonderful partners in our center because, although they don’t have disabilities, they know the shared pain of rejection, the pain of being regarded as an object or the adjustment necessary when your life is dramatically changed.

I love this work.  Is it difficult to find qualified people to work for the CIL? Yes.  It’s a hard-to-find person that we need.  Our employees not only have to “get it” about disability, but they have to be competent with their own disability.  They have to be competent professionals who drive themselves to do the work and document it.  They have to know lots of things about lots of disabilities that aren’t necessarily their own.  They have to have a certain attitude about their disability that says, “I can manage this, and you can manage your disability too.” They can’t have chips on their shoulders but neither do they need to passively allow others to treat them like four year olds.  I guess you could call it being a fighter with a smile.  Or, maybe sometimes not.

Developing a CIL is about empowering and helping consumers.  Is it difficult to know when you’re empowering consumers and when you’re doing too much?  Yes.  Anyone who tells me that they’ve got it figured out is lying or delusional.  Far too many CILS are small, struggling agencies awaiting a leader who “gets it” and also has the requisite management and organizational skills.  But, I’m proud to be in a country that understands that it’s worth doing even though that means accepting some failure as the price of progress.  I think far too much is made of CILs that fail.  It comes with the territory.  Take a population that has little experience of being in charge, of having few expectations for themselves or from others, and you get a lot of false steps which we too quickly regard as failures.  Every minority must pass through this process on to true integration and high expectations.

CILs are far more than service providers.  It’s hard to integrate the “service provision mentality” with the “philosophical empowerment mentality.”  For example, we have employees working at Baltimore City, Baltimore County and Harford County at the Aging and Disability Resource Centers, (ADRC’s).  These are some of the most difficult jobs we have.  We’re asking our staff to go into environments that have focused on care for the elderly and have little or no knowledge of helping people take charge of their lives.

We’re asking our employees to be examples of that empowerment philosophy, knowing that they are outnumbered, in some cases, a hundred to one, and knowing that they are under the microscope, being regarded as the example.  That’s a tall order and an often painful one for them.  It’s not just about doing Information and Referral and doing options counseling.  If that’s all we do, these agencies really don’t need us.  Our job is to transform a system that has been the way it has been for quite some time and to learn from that system as well, understanding that they too have lessons to teach us about the difference between delivering services to people who are ending life and those who are beginning new lives.  Ideally, it’s a trading of experiences.  Aging services have always seen themselves as in the business of care-giving while we see ourselves in the business of empowerment.  Aging systems tend to be risk averse—keeping things safe, while we see ourselves as allowing for choice and acceptance of risk.

Fortunately, there are good people in the aging system and people who want to “get it.”  And there is the federal push to make this happen because the aging and medical systems are finally coming to understand that helping people make decisions and take charge of their lives makes sense both philosophically and financially.  And, they’re being told by their State and Federal bosses to look to the CILS for the example of what it can become.  And, it’s our job to be that example, no matter how difficult the challenges.

I say all of this to help you see into the CIL world.  People use the term “independent living movement” and frankly don’t understand what it means.  A movement like the civil rights movements for African-Americans, gays, or women, has a flavor when it’s real and people respond to it.  We have much in common with immigrants–The Irish, Italians, and more recently, the Hispanics because they have all struggled in ways similar to ours.  Just like each one of these groups, we learn who we are and others come to accept us.  The road to full equality is long and generations to come will judge our progress far better than those of us who toil, not knowing the results.  You and I don’t judge the Irish as inferiors because those battles were fought and won long ago.  Someday, disability will be one of those long forgotten battles.  For now, we look, seeing the short term struggles as the entire battle.  But really, we are changing the long-term definition of disability for everyone.

There’s certain energy in a CIL that makes it all worthwhile.  We have gone from no employees to ten over the past three years.  We have a very unique staff–A little person (she’s three foot three), people in wheelchairs, people with invisible disabilities, people who are blind, hearing impaired, people of different racial backgrounds, and, yes, we even have people without disabilities, but they truly “get it.”  Bring all these different racial and disability differences together and it is truly transformational.

People say, “You’re really lucky to have such a perfect job.”  Yes, I suppose so, but then again, I mean something different than they do.  What I mean by the perfect job is that I get to be around wonderfully creative people every day and that, twenty percent of the time I get to spend on wonderfully creative activities.  The other eighty percent of the time is spent doing the daily chores of management—budgeting, writing grants and monitoring them, checking over bills, reviewing State and Federal regulations, reviewing nonprofit laws, —in other words, even the perfect job is mostly taking care of the daily boring business of the CIL that keeps the doors open.

For me, with all the paperwork and frustration, it’s the most exciting thing I’ve ever done.  I’m hopeful that we will continue to grow into being a real CIL, not just a service delivery system but a place where the disability and professional community come for growth and empowerment.  It’s not just an office we’re trying to build, or a service delivery staff, but, a positive empowering environment made of people who “get it.”

I want to thank all who came before me who made this possible and to thank my employees, who daily do the work of creating a better future for us all.

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Sex, Censorship and Disability

People with disabilities should have control over their own lives. 

 

Most people agree with this statement.  Practically everyone who works in the disability field feels that self-determination is the key to a successful and independent life.  We encourage learning to travel alone, managing your money, taking charge of your health care, and more.  However as soon as one subject comes up that people with disabilities want to learn more about, there is a scramble to make sure that it is censored.  That subject is…. sex!

silhouette of two people kissing

Those of us with disabilities are no less interested in sex than the general population; We are, often however, less educated about sex.  Often times sex education in schools is left out of special education classrooms.  People who are injured are often not told about the changes in their sex lives in rehab, other than to adjust their expectations, whatever that means!

 

I completed my thesis on sex for people with spinal cord injuries and cerebral palsy.  Here at the IMAGE Center I designed a presentation on sex, dating and disabilities that is accessible, interesting and honest.  The presentation has been well received by consumers and people who work with them.  Caseworkers have told me about consumers who have tried to pay for sex or racked up huge credit card bills on porn sites or have never had a sexual experience or romantic relationship.

 

You would think that organizations that hold themselves out as meeting the needs of adults with disabilities would want to inform their consumers about this extremely important part of life.

But, here at the IMAGE Center we don’t always find this to be true.  Management in some organizations, usually people without disabilities, gets spooked when it comes to talking about sex and dating.  They either cancel the presentation or try to tell us which information we can present—even going so far as to tell us which slides should be eliminated.  And, these are presentations to adults.

 

This ongoing attempt to censor our presentation reeks of paternalism.  People with disabilities, who are all over the age of 18, have every right to make the decisions about what they would like to learn about sex and dating. At the IMAGE Center we believe strongly that adults need this information in order to prevent assault and abuse, and, to live more full and fulfilled lives.

censored

Disabled symbol having sex with a symbol of a person with the word censored stamped over it.

 

People with disabilities have the right to information and if we are serious about promoting independence then we have to acknowledge sex.

 

With nearly universal access to the Internet, people will get information, some useful and a lot not!  The value of my presentation is my information is accurate, accessible and I am willing to answer questions.

Please join me for my presentation at The IMAGE Center for People with Disabilities on June 12th at 6pm.    Click here for more information and to RSVP.

 

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Found History is Disability History Meredith Ritchie

Found History is Disability History

Meredith Ritchie

As you may have heard in the past couple of months archeologist in England have unearthed the skeleton of King Richard III.  King Richard III was the last king of the House of York, ruling in the mid 1400s.   The skeleton was found under a parking lot in Leicester, England, which was the former site of Greyfriars Franciscan church.

Why do we in disability care?

King Richard III had a disability.   In his early and mid-teens he developed idiopathic scoliosis.  Now days a person who has scoliosis is treated with physical therapy, orthopedic braces or surgery.  However in the fifteenth century there was no treatment.  Thus Richard III had a severe S-curve in his spine, that gave him a shorten stature and raised the right shoulder higher than the left.  This would have been what gave him the “hunchbacked” appearance, which is often mentioned in documents about him.  I feel a special connection to him in this way, as I developed the same condition in my early teens.  I know how the spinal curve would have impacted his everyday life, and I can understand what sort of appearance it would have caused.  The difference was simply 500 years difference in time. 

 

Disability and History

King Richard III’s later demonization came, primarily, from the Tudors who ruled after him.  The play Richard III by Shakespeare did a lot to help this bad reputation.  Yet most of the contemporaneous works speak more fondly of King Richard III and while they mention his disability they are more realistic.

Here was a man who was very active, hunting, horseback riding and leading in battle.  He was also described as a cunning and shrewd ruler.  This was not a man whose disability was seen as a hindrance.   The more people with disabilities whose contributions can be studied in history the more positive image we can have of ourselves.  A young person with a disability may be discouraged from participating in sports because “people with disabilities are incapable” Yet if Richard III could lead battles in the days of knights and swords why can’t this kid play sports.

History is full of role models for people; it is time that the disability community starts claiming ours.  And with this amazing discovery of Richard III’s grave there is no better time.

 

 

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Good Intentions Gone Bad

The article below was reported on May 5, 2009 by WSBT television in South Bend Indiana and has received wide distribution on the internet.  It illustrates how good intentions often produce unhealthy outcomes.  As you read the article, please notice that every person involved in the story wanted to be positive, say yes and empower this nine year old boy.  However, as you read the article, also ask yourself whether the end result was really healthy, either for Cameron, or for his community.

What actual purpose did/does he serve on the team?

Wasn’t it a bit of gratuitous nonsense to call him the “team manager?”

What benefit is there in giving him a title without a real purpose?

Why was he unable to throw the ball to the catcher–surely blindness doesn’t create weakness does it?

If we’re ever going to create a world in which disability is thought of as a normal part of life, don’t we have to begin by treating people as more than potted plants?

Finally, doesn’t this article just drip with a complete lack of faith that this kid will ever be able to do something useful?  Doesn’t it really say, “We really ought to make him feel good because he won’t have much of a life otherwise?”

And, isn’t it sad that his mom knows so little about the possibilities that thousands of blind people are living every day?

I insert my comments into the story in brackets. []

Blind baseball player “hears” his dream come true on local Little League team

by Troy Kehoe (tkehoe@wsbt.com)

Story Created: May 5, 2009 at 8:13 PM EDT

Story Updated: May 5, 2009 at 10:43 PM EDT

EDWARDSBURG — Tears of joy flowed in Edwardsburg as history was made on the baseball diamond. A Little League hopeful who thought he’d never be able to be a part of the team finally “heard” his dream come true. It was a party on the diamond, as Edwardsburg Little Leaguers celebrated the “official” addition of a new teammate. But this baseball player isn’t like anyone you’ve ever met before.

To say Cameron Beaver is a “baseball fanatic” might be putting it mildly. As far as 9-year-olds go, you’d be hard pressed to find a bigger fan.

“He’s very upbeat and very energetic. And he just makes everybody around the park excited too,” said Edwardsburg Little League President Pat Maloney.  You have a tough time finding a better teammate or a more enthusiastic player, either.  Yes, you’d also be hard pressed to find any Little Leaguer quite like Cameron.  You see, Cameron can’t see.

Just a few months after he was born, he was diagnosed with “bi-lateral retinoblastoma”–a cancer of the retina. To keep the disease from spreading, doctors had no choice but to remove his eyes.  Cameron’s love of baseball, and his dream of someday playing quickly faded into fantasy.

“This year, he came out for the team with his older brother Aaron, and the first words out of his mouth were: coach, can I be on the team?” “And… what do you say, you know?” said Tony Gaideski, head coach of the Edwardsburg Little League’s Legends Restaurant Team.

So, imagine Cameron’s surprise when coach’s answer was, “yes!”

“I said, absolutely, Cameron! You’re on the team, buddy! No doubt about it!” Gaideski said.

Except there was doubt.

[Yes, there should have been doubt.  What would this kid do that was meaningful?  What team responsibilities could he take on?  Might he be a bat boy or ball boy?  Team score keeper?  How about asking blind adults to help figure out things he could do?]

Last year, Cameron “unofficially” joined the team. But, that was never approved in writing.  Little League safety rules for upper level teams like Aaron’s prohibit those with disabilities like Cameron’s from actually being on the field. So coach Gaideski asked Maloney for help. Maloney then asked Indiana District 14 Little League Administrator Marlin Culp for help.

On Tuesday night, it was official.  As team lineups were announced over the loudspeaker, there was one new name added at the end: Cameron Beaver.

The grinning 9-year-old emerged from the dugout with help from his coach, and took his place along the first base line.

[Why did he need help from his coach to go to the first base line?]

Then, things got even better.

“We’d like you to throw out the first pitch, Cameron,” said Maloney.

“All right!” replied Cameron, his tone more an exclamation than an answer.

The ball didn’t quite make the catcher’s glove, but that didn’t stop the crowd on hand from launching into a standing ovation.

[Perhaps if they had believed in this kid just a little they would have taught him to actually pitch the ball.]

“In my 32 years of Little League, I’ve never heard of anything like this,” Culp said during an address over the Little League stadium’s loudspeaker. “I’m glad we could make this happen.”

Cameron was too.

Clutching the baseball signed by League officials, the trophy for being the Edwardsburg Little League’s “volunteer of the year,” the brand new baseball cap and the major league all-star game pin he was presented with, his response was pretty simple.

“Look at all these prizes I got,” he said with a big grin. “It all makes me feel pretty special!”

[Special indeed.  No purpose on the team.  An audience wildly praising him for accomplishments that a five year old could accomplish.  What will this do to his expectations for himself?]

It made his mom Susan feel pretty special, too.

“This is awesome for Cameron,” said, wiping away tears. “He’s not usually a part of anything. And this is just awesome for him to be a part of this. Words can’t really describe it. He’s just so excited and happy. He loves it.”

[It’s telling that she says he’s not really a part of anything.  I wonder why?  Is it because he’s treated like a five year old at home so kids his age don’t want to play with him?]

Cameron’s response to that was, well, what Little League is really all about.

“I just felt good inside me,” he said with a laugh.

Then, when asked if he was excited about being an “official” part of the team, he paused for a moment.

“As a matter of fact, I am,” he said.

His jersey now reads “team manager,” and that’s exactly what he is.

[Team Manager??? That’s really disgraceful.  I suppose we’ll be working with him in a few years trying to help him find employment and he’ll be surprised to learn that you actually have to do something to earn money.]

“Every inning we come off the field, he’ll be the first one out of the dugout,” Gaideski said. “He leads the team cheer, and a lot of the players will actually argue about who gets to sit next to Cameron on the bench now.”

“At first sight, you wouldn’t even think he had a disability,” agreed Legends team assistant coach Josh Masten. “He’s just a good kid to have around.”

[That’s nonsense.  All of you know he has a disability.  In fact, you know it so well that you make up titles for him and have to help him to first base.  Don’t try to dress it up with some drivel about how you don’t think he has a disability.]

Now, he’s a good kid that will be around the game he loves. You don’t need to “see” that to believe it.

And there was one other bit of exciting news for Cameron Tuesday night.

Culp says Little League’s District 14 is developing an expanded “challenger program” that could allow Cameron to actually “play ball” on the field by “hearing” the ball as it comes to the plate.

“That would be the highlight of his life,” laughed Susan. “This will be hard to top. But, that would really be a dream come true.”

[Yes, there are actually beeping baseballs and leagues he could play in and do something requiring skill.]

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Finding Your Passion

For most of us, finding our dream job is a slow and uncertain process.  Recently I spoke to somebody who indicated that the reason he wasn’t working was that “I’m not sure yet what my passion is.”

It occurred to me that perhaps some folks may be confused about following their dreams and fulfilling their passions.

First of all, let’s get something out of the way.  It is the very rare person who has a deep driving passion to paint, sing, write, prepare exotic foods or dance.  When somebody does have such a drive, and that drive is matched with talent, we call him or her a genius.  Most of us are a mix of talents and abilities, some stronger and some weaker than others, as you might expect when there is a random combining of the dna from your father and mother in to the human being you are.  Some things you may wish you could do but aren’t very good at, like singing.  Other things you seem to have a nack for like woodworking but the nack must be developed through much discipline and at it’s best you can build a nice coffee table.

You may enjoy speaking and have a nack for keeping the attention of audiences but struggle with the creation of really top notch speeches.

Or, perhaps you have talent in managing people because they respect you, but find that the details of management simply aren’t your strong suit, so you spend hours forcing yourself to master the details of projects.

I describe each of these scenarios to you in order to help you understand that this is the human condition.  This is how most of us find ourselves.  Some mornings we wake up with little drive and little interest in changing the world and other days we’re certain that we can leap tall buildings with a single bound.  But, on both types of days, we trudge off to work because we have learned that life is about the valleys and the mountains and that both must be crossed in order to reap the reward of fulfilling accomplishment.

Finding one’s true passion may take a lifetime of trial and error.  You may discover that the thing you were certain was your passion simply proves boring and uninteresting.  And, you may discover that some mundane and not-so-glamorous task turns out to be richly rewarding to you.

The point is, you often won’t know any of this ahead of time.  Life is about “doing something, even if it’s wrong,” as the old saying goes.  The more you do, the more chance you have of finding things that match your talents, skills and aptitudes.

And, the final point I would make is that some of your daily work should be difficult.  It should be hard and frustrating for you.  It should stretch you.  It probably won’t be fun and it probably won’t be glamorous.  That’s the nature of life.  The reward for doing all of these boring activities is that along the way you will also find that some of them become the expression of your inner self and that, as you grow, you do truly find your passion and fulfill your dreams.

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DOES THE JOB MARKET REALLY NEED ME?


Magnifying glass searching job listings in the newspaper
This is a great time of year to look for work.  Everybody who is actually in their office is in a
good mood because of the summer and not too busy to talk with you.  This is the time of year when creative CEO’s and directors are recharging their batteries, formulating plans, and analyzing shortcomings.

So, what about you?  Are you meeting with them?  Are you networking with them?  Have you written a thought provoking article lately about your field?  Have you developed a new program idea?

If not, you should know that the economy doesn’t really care.  No, no, I’m not being snarky or negative.  I’m making a point.

The economy is currently producing the same level of Gross Domestic Product now that it was in 2007 with fifteen million fewer workers.  The reason for this is in part that the economy is more efficient now than it was then.  But, whatever the reasons, you should be aware that you aren’t needed in today’s workforce unless you demonstrate unusual drive and skills.

Lest you think there “Aren’t any jobs,”  I refer you to the monthly data from the Department of labor that indicates there were three million openings in May of 2011 and that the labor turnover was about three percent.  So, in your local company with 200 people, six of them either left, died, got fired, or something last month and there were vacancies needing to be filled.  The question is, will they be filled by you?

Are you really networking with the people who know about new positions?  Are you demonstrating your value to them by creating articles, developing new ideas, really staying connected with the middle management folks who do the hiring?  These are the folks in positions of effect–that is, what they do creates new positions, sets goals, determines strategies and carry out the accomplishments of the company or organization.

Are you excited enough about your chosen profession to read new articles every day?  Do you keep up with trade publications, blogs, magazines and listservs to put your finger on the pulse of current thinking and opportunities?

Do you have a sense of what makes you special, unique or better than the next person?  If you don’t, how will others know what it is?

With today’s employee surplus, its a buyer’s market.  Employers can pick and choose amongst possible applicants, knowing there is no shortage.  If you aren’t quite right, somebody else will be.

If you have a severe disability there are other issues.  The world’s message to you is, “stay home,”  “You’ve got it hard enough already” and,  “the government will take care of you.”  So, If you want to work, you’d better be prepared to do what the experts do when they look for jobs, not just be one of the herd.  Nobody I know who has employed the techniques listed above has ever failed to find meaningful employment, but, many I know who simply send out resumes and fill out standard applications are sitting at home and probably will be for the foreseeable future.  So, if you really don’t understand the modern work finding process, hook up with somebody who does and do what they tell you.  Stop using worn out old methods that don’t work and learn the newer and more effective methods of how to link with others.  When you do, the process will become interesting and fun and … Well, it’ll be all the things you hoped your profession would be.

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NCIL’d and Dimed

Tyler Kutner smiling warmly and triumphantlyWhat do you do when you hate your disability and are suddenly surrounded by hundreds of other people with disabilities? That’s what I was trying to figure out while staring at my scooter’s steering wheel during the opening plenary of the annual NCIL conference in Washington, DC.

Everywhere I looked in that conference room I saw wheelchairs, scooters, canes, deformed limbs, and hearing aides. It made my stomach churn to think that I tried so hard to divorce myself from any notion of having a disability, let alone the idea of a broader disability community. My hands started to tremble lightly as I realized that the people around me were actually friendly, but still I felt out of step with their general air of solidarity. The voice in my head that always said to me “I couldn’t possibly be one of them” was louder than ever. I just wanted to jet out of the conference room and find the quickest way back to Baltimore.

NCIL organizer Mark Derry’s rallying cry silenced that voice as he boomed, “What do we want?” and the whole room answered “Freedom!” Mark was different from the other talking heads on the panel. Instead of talking about how our friends Senator Harkin, Secretary Sebelius, and President Obama were our greatest allies on Capitol Hill, he was vociferous and pissed off. He showed me in that moment that I could use all of the anger I’d bottled up over the years to make a difference. It was the same ethos that attracted me to punk rock, but with a sense of earnestness and relevance that I’d never seen before.

After bumping my scooter into wall after wall, slamming my foot into a restaurant doorway, and swerving past the potholes of DC’s streets, it was time to bed down for the night and prepare for the next day’s protest.

In the hotel lobby as we were leaving for the march, I met a guy named Barry from Savannah, GA who also had CP. I told him that my sister lived there and that I’d been feeling very isolated before I came to the conference. In his comforting southern drawl, he explained that he felt the same way when he was eighteen and that it was completely normal, whatever the hell “normal” meant.

As we filed into line and headed from the Grand Hyatt to Capitol Hill, I began to think of what my disability meant to me emotionally and politically. I have one glaring thing in common with thousands of people. People who’ve been treated like invalids and told they were stupid, who’ve been stared at, rejected, and ostracized because of something they couldn’t control. It’s all I can do just to be a part of the independent living movement. I may not always follow NCIL’s party line, but at least I know there are more people like me.

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Announcing the IMAGE Center’s Disability Skills Library!

Have you ever wondered how an amputee ties his or her shoes, how a blind person knows what clothes to wear, or how someone who is paralyzed transfers in and out of a wheelchair? The Image Center’s Disability Skills Library is a collection of  candid and informative YouTube videos which provide the answers to these questions and many more. Currently featuring over 9 hours of footage from around the world, our library is a comprehensive compilation of disability information. Check it out!

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