The following article was submitted for publication to the Baltimore Sun on December 29th, 2015.  It’s difficult to say, in under 750 words, anything that has nuance or depth, but, I did feel as though we should try to alert our Baltimore Community that this very unique project is seeking funding and the challenges we face.:

“I am from the minority called disability. It’s a complex group, some disabled from birth and most as adults, and if your disabilities are mental, nobody knows you have it just by looking. Unlike being a racial minority, everyone wishes the best for us. Our road to hell is paved by the good intentions of the nondisabled. You care. You pat us on the head and tell us to be strong, how brave we are, how amazing we are, and how impressed you are when we smile. Unfortunately, all this misplaced compassion, however kindly meant, really doesn’t empower us to live our lives or raise our families.

The IMAGE Center of Maryland, based in Towson, is working on a project that will literally change the lives of over 600 million people with disabilities throughout the world at a cost of under five million dollars, but, ideas that don’t fit neatly into our preconceptions, also don’t fit into existing funding mechanisms.   The IMAGE Center doesn’t see disability the way you probably do. We see much of disability as a tools and techniques problem rather than a limitation you must learn to accept. What the woman paralyzed wants to know is, “How do I get my life back?” How do I raise my kids, drive the car and get back to work?” And unfortunately, there isn’t any place on the web for her to see people just like her do these simple things. She can go on the web and search for “wheel chair cooking” but think about it for a moment. Being in a wheelchair doesn’t really tell you much about her. How much leg movement does she still have? Can she stand some? Can she move one leg but not the other? And, how much arm or hand use does she have? Some fingers on one hand but not the other? Left arm but not right? Each of these is important if she’s really going to see people who are solving the problem she needs to solve.

Recognizing this, the IMAGE Center is developing an online web sharing and search tool so she can see people, dozens or hundreds of them just like her, successfully living their lives and how they do it.   Think about everything you know how to do. You learned it by observing and imitating. That’s the way humans learn. Unfortunately, most people with disabilities, whether temporary or permanent, have never seen anyone like them and how they solve daily life problems. So, hundreds of millions of people throughout the world struggle to make a life without the essential of imitation.   With the modern web it is possible to create a video sharing site where people can specify their exact set of limitations and see dozens or hundreds of people just like them and how they create solutions for everything. We call it the Aging & Disability Skills Gateway. Check it out at:   For most of us, disability means care. Disability means less of a life except for those few who succeed that we regard as heroes and amazing, not realizing that these are just the creative few who can make up a life without that all essential roadmap of people to imitate.

Medical professionals want to cure us. Disability professionals want to care for us. The press wants feel good stories about the disabled hero overcoming all odds, or pictures of the ice bucket challenge, while ignoring the actual challenges of the disability itself.   Slowly we are making progress. A recent TED talk profiled our project as one of the three primary challenges of disability in the 21st century.   We here at the IMAGE Center leave 2015 frustrated. We know that out there somewhere are people who see disability as a problem to be solved. We know there are those of you out there who will join us as we create this new vision of disability. But for the moment, like other minorities, we still feel like the power structure and those who work in it are well intentioned yet misguided.”

Personal Experience

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.


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.

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.



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.




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 (

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.]