One of my favorite quotes is: “Look at what you have left, not at what you have lost (Schuller).”
Great advice. But when your life is full of losses, it is difficult to let go of the sadness and find joy in what is “left.”
Aaron was losing skills that took decades to build; and,
The pendulum was swinging back toward segregation and away from inclusion; and,
My best efforts at change weren’t making any difference; and,
My best friend died tragically.
Up until that point, I spent my free time reading non-fiction books like: Enabling and Empowering Families, Whose Science? Whose Knowledge?, Man’s Search for Meaning, When Bad things Happen to Good People…
You see a pattern?
I kept trying to learn a new way to make an inch of forward progress on our journey toward inclusion.
I kept beating my head against a brick wall, and the only thing I was getting was a bloody headache.
I decided I needed a new direction. “What did I have left”?
What new patterns could I make in MY life?
Not Aaron’s? Not the community? Not disability world? MY LIFE.
One for the Money: One hot Ranger
A friend gave me Janet Evanovich’s book, One For The Money, a romantic comedy about Stephanie Plum, a blundering bounty hunter who has help from a hot cop and an even hotter businessman named Ranger.
Well, it was funny and made me happy. I finished it in one day and it gave me new energy and spirit. I felt a touch of “normal.”
I began to read romance novels which would guarantee a “Happy Ever After”–something I probably won’t be able to achieve in real life.
I know, I know… people make fun of romance novels. But not booksellers–they know the romance genre makes up over 30% of all books sold.
Well I was hooked, probably for many of the same reasons as many women (and men). I was able to escape into a good story, ignore my problems for a while, and know the ending will be “happy ever after.”
I WANT HAPPY EVER AFTER.
Since I am obsessive about everything I do, I joined National and OVRWA, our local chapter of the Romance Writers of America. I even started writing a novel and became an editor for a small online epublisher.
Hey, I’ve been on boards of the Arc, TASH, Autism Society, County Board of MR/DD and scores of national, state and local organizations for people with disabilities. I can follow Roberts’ Rules of Order with the best of them. I even have a wooden gavel in my desk drawer from my tenure as president on one board.
What I don’t know how to do–is be normal. I don’t know how to include myself in my community.
Yea, the topic I have spent my life on–for Aaron.
But what about me?
How do I “normalize” and “include” myself?
Ranger meets the Rangers
OVRWA has been a terrific experience because of some amazing women. They are serious writers. Some just beginning, some NYT best sellers whose names you might recognize, or will recognize in the future.
I enjoy every minute of their company… and have learned much about writing, publishing, and … living.
In a previous post I wrote about Wheelchair Becky becoming a romance writer. I am finding I don’t have to give up my beliefs, they only become clearer. I don’t have to change my passion for inclusion, I can find it everywhere.
Last month’s presentation was for the historical romance writers in our group. Two men (much sexier than the stock photo above) brought their collections of American Revolution costumes, stories, artifacts and gave a well rounded presentation of the English and the colonist’s viewpoints. They helped us relive the time period and much more.
Professional vs. Amateur
In their opinion, the Americans won because of their passion for the cause and their ability to adapt to the environment.
The Americans were amateurs, with few men, no royal blood or fancy educations, little professional experience, less sophisticated weapons, few funds…. taking on the most powerful military force in the world.
The professional soldiers kept insisting on fighting with traditional European formal rules of engagement wearing bright red coats. The Americans fought as the native Americans and wore dull natural clothing blending into the landscape. The English had many strategies to induce fear and authority. The Americans brought passion and dreams for a better future for their children.
How many administrators tell parents of children with disabilities: “we are the professionals, we have degrees and experience”; “rules is rules”; “this is the established way we do things”; “we control the money and you have to do things our way” or “we are just doing our jobs”?
How many parents say: “we don’t care about your fancy degrees or experience”; “if a rule doesn’t make sense–change it,” “we don’t want to be ‘special’; we want our children to blend into a normalized environment” and “this is my child, and his/her future is at stake–we will challenge you with every breath in our body”.
At one point the presenters demonstrated their “Ranger” battle techniques where–if you knew what you were doing you could disable your enemy with a single movement.
The presentation was compelling and informative as doubting members of the audience were “gently” flung to the floor with one twist of the arm.
I wondered when I might be able to use some of their information when I happened upon this video.
Kick-ass Aikido
A woman with a physical disability, I’m assuming paralysis from the waist down, is able to flick off her attackers with a single arm movement. It is remarkable and looks exactly like the Ranger’s technique.
Summary:
It is so easy to get caught up in Disability World. So hard to be part of the normal world. But there are many opportunities if we look.
And, it is exciting to be with people who are not active in Disability World.
They can teach us lessons, but more importantly, help us learn about the human spirit.
I love that last month’s OVRWA meeting made me think of the professional/amateur professional/parent connection. If a rag tag group of farmers could win against the most powerful military machine of the time–there is still hope for us parents. The strategies and techniques of defeating professional soldiers, paid mercenaries, and hostile native Americans brought the two worlds together for me as I watched this woman the world would say was weak and vulnerable–ward off her attackers with the flick of her arm.
Survival strategies remain the same.
We need our vision and passion–Freedom and Liberty are still powerful motivators.
We need to continually change and adjust to the situation if we are to survive.
We need to blend into our normal environment (INCLUSION).
We need to keep learning new moves.
ps. One for the Money will be coming out this summer. Katherine Heigl is playing Stephanie Plum and Daniel Sunjata is Ranger. And there is a plot, I swear (at least in the book).
What do you think?
In the comments share your thoughts about the analogy of the American Revolution Rangers and Parents of children with disabilities? The video? Any lessons from books, recreation activities that inspire your work? Anyone want to sign up to be a Ranger? Take Aikido? Any new insights about inclusion? Any ideas about “Happy Ever After”? Any ideas about “looking at what you have left”?
I am going to update some of the better articles I’ve written for my classes, parent newsletters and magazines. Hope you enjoy them.
Since Aaron was young, the language has evolved. When this story took place they used the words, “mental retardation,” then the words become “developmental disabilities” now it would be “intellectual disabilities.” I’m using the original words as I experienced them.
“Help the mentally retarded! Help the mentally retarded!”
I had just bought some 99 cent grapes, a pound of hamburger, loaf of bread and a couple other items to make dinner for my family when I was met at the door to the grocery by three older men wearing brightly-colored vests and hats with tassels. They were holding little cans and urging shoppers to “Help the mentally retarded!”
I grabbed my groceries and, not even looking up, hurried to my car. As I passed, one man said (in a very superior) voice, “Not all babies are born healthy.”
I felt my face flush and when I paused, he went in for his killer argument, “We aren’t ALL blessed with normal babies, you know!”
Well, that did it. Turning, I said, “I have a child who has the label of autism and I think it is very condescending to have to beg to raise money for quality services. He needs respect for his civil rights, not begging and charity.”
Well, the men and their swinging tassels all stopped and circled me. They were aghast. “What do you mean?”
I thought about just grabbing my bags out of the cart and running to my car, but instead looked him right in the eye. “People who are retarded need real opportunities. They can be valuable workers and contribute to society. Retarded people as objects of the mercy of others reinforces the negative stereotypes of the past. In fact, now we call them people with intellectual challenges and don’t even use the word retarded.”
“But honey, last year we raised over $300,000 in our state.” The man straightened his hat and looked like I had sucker-punched him in the gut. “One-third of that money is going toward adding a retarded adult wing onto Children’s Hospital. Also we began a new women’s group home. We stand here in the rain and cold to help. We are volunteers. We don’t get anything out of this.”
At the entrance of the store a crowd was now gathering. I knew he was probably a nice man only trying to do his Christian duty. He was sincere and dedicated, only ignorant of the principles of normalization and inclusion. The staring and frowning faces of the crowd told me they were on his side. I half expected flying can goods to start stoning me. After all, who takes on God’s Knights right in front of Krogers?
I certainly didn’t plan on making a scene. So, giving the man a smile, I just said, “Well, I serve people who have developmental disabilities in other ways” and tried to push my grocery cart around him.
He gently put his hand on my shoulder and assured me God would take care of me and my son. Then, to show no hard feelings, he put three Won’t you give an extra inch? wooden rulers into my bag.
Well, once again I had done it. My husband is always telling me to lighten up and get a new hobby. For Pete’s sake, here I was in a confrontation in front of the grocery store.
Perhaps next time I’ll just drop a quarter in the cup and make the man happy… but… in the meantime, I’ll work “inch by inch” to replace the poor helpless eternal child stereotype with an image of a citizen with real value, dignity and rights.
Share Your Thoughts
How would you handle this? Have you had similar experiences?
The kicker is that Children’s hospital no longer even wants to serve adults with disabilities. Do you think that is a good or bad thing? Also, in 2012, the Knights would be saying, “Help the children with intellectual disabilities,” right?
To those of us who care about people with disabilities, it is always shocking to hear about media personalities attacking the vulnerable people we love.
“R” Word Slips of the Tongue
NBA star LeBron James apologized for saying “that’s retarded” during a post-game press conference.
That was bad. But he apologized, and hopefully learned to never use the “r” word again.
Some would argue this was an example of the Politically Correct Police censuring free speech. This would be true if there wasn’t a long and recorded history of discrimination against people with intellectual disabilities. Check out the Parallels in Time website if you have any doubts.
With Rosa’s Law and large organizations like Special Olympics actively challenging the media personalities who use the “R” word publicly, there is a gradual shift in the public’s awareness. This is a giant step to improving the image of people with disabilities.
In another post, The ‘R’ word| A challenge to Bloggers I asked bloggers to not use words that insult people with intellectual disabilities and gave a sample letter which made a difference in one blog.
We all make mistakes, we all can learn to be more sensitive. Sometimes our letters need to educate good people who just haven’t walked in our shoes.
Purposely Insulting People with Intellectual Disabilities
BUT…when public figures purposely insult and promote segregation and prejudice against people with intellectual disabilities and think it is funny or entertaining–that is another story.
Dennis McNulty, Director, Catholic Charities Disability Services in Cleveland, Ohio alerted the Arc of Ohio with this shocking story about a local radio station:
The Rover’s Morning Glory radio show was talking about how people with disabilities, using the “r” word to refer to this group of people, cannot and should not hold jobs, are incapable of learning in school (specifically people with Down syndrome) and the disc jockey cringes whenever he hears or sees them out in public. He goes as far as saying when he sees them working in the grocery store, he is disgusted.
Even worse, the radio station chose to re-broadcast this particlular show.
Please use the link below and either call or email the radio station to express your displeasure with their choice of programming.
Mr. McNulty also advises:
The only way to do anything is by associating the advertisers and the radio station DIRECTLY with the insulting behavior.
That means calling the advertisers (and getting to the top person) and making it clear your organization and its supporters, AND its nationwide reach, will tell the public that Such-and-Such company supports the insulting, belittling, and marginalization of people who have disabilities. And that WMMS stands for the insulting, etc.
Nothing else will stick. Generally the advertisers could give two hoots about this, because they are reaching a large target audience through the Rover program. WMMS could give two hoots because it is precisely that kind of humor which draws the audience in the first place. So everybody profits at the horrible expense of those who are being ridiculed.
Again, the ONLY way to have an effect is to directly link the radio station and advertisers as being SUPPORTERS of ridicule, prejudice, insult, and marginalization.
Ask the advertiser, “do you support the ridicule, prejudice, insult, and marginalization of people who have mental disabilities? You don’t? Well, we think you do, and we will tell the public. Why? Because you advertise on that radio station, which has now become an outlet for the ridicule of people who have disabilities. And we will directly link YOUR company to that degrading conduct. The only way out of it is to PUBLICLY pull your advertising from WMMS and stand with us. Period.
Take action as you feel appropriate…. Please share with others.
Dennis C. McNulty, D. Min.
Director, Catholic Charities Disability Services
Now it is easy to say, “let the big organizations, or the advocates, or the parents or … take the action.”
But there is a power in one person–YOU–calling or writing an email to the station. Here is the link to the station information:
ACTION ALERT: A challenge to those who care about people with disabilities
Below is my letter to the radio station in Ohio, I’ll let you know if I get a response.
If you are as concerned as I am, I encourage you to also send your email to the radio station. Click here for the link to the radio station.
Here is my email to WMMS:
May, 11, 2011
I was shocked to learn WMMS was insulting people with disabilities and their families on the air.
Many people with Down syndrome and other intellectual disabilities can live, work and go to school in their communities and for your Rover’s Morning Glory radio show to say otherwise is discriminatory.
There are only two kinds of people in the world: the disabled and the “yet-to-be-disabled.” Each one of you and your family members are only one accident, one illness away from having a permanent disability.
Think about it, the insults you hurl not only reflect on you, but on the whole Cleveland community.
If you live long enough—you WILL have a disability. How many of your listeners have family and friends with intellectual and other disabilities?
How many of your sponsors have children or family members with disabilities?
When you target one group of people to degrade, ostracize and alienate as being different from you, you only make yourself look petty and ridiculous. You might think that by putting down people with intellectual disabilities, you are making yourself look better—but in fact, you are degrading yourselves.
I ask you to stop this segregation tactic. People with disabilities have the legal right, and the human right to be part of the community. We will not force them into the backwards of institutions and out of the public eye.
Instead we will celebrate their gifts to our common community. We will embrace them in our human family.
WMMS would not dare insult other minority groups. Why would you pick on these vulnerable people?
You are embarrassing yourselves.
Sincerely,
Mary E. Ulrich Ed.D. and mother of Aaron, a person with an intellectual disability
Summary:
Two scenerios:
A media person says the “R” word and then apologizes.
A media person says the “R” word to increase prejudice against people with intellectual disabilities.
I’m hoping you will want to be a part of the solution and take an action step.
Email, Call, Tweet and use your social media resources to spread the word that people with disabilities are just like everyone else and these attacks will not be tolerated.
Comments:
It will only take a minute. Will you write an email to the radio station?
To the best of my recollection, this is how it worked:
The Landscaping Mobile Work Crew
Definition: Supported Employment Model: Mobile Work Crew
A small crew of persons with disabilities (up to 6) works as a distinct unit and operates as a self-contained business that generates employment for their crew members by selling a service. The crew works at several locations within the community, under the supervision of a job coach. The type of work usually includes janitorial or groundskeeping. People with disabilities work with people who do not have disabilities in a variety of settings, such as offices and apartment buildings.
Sometimes Cemeteries are for the Living.
JOB ANOUNCEMENT: The cemetery board posts the lawn maintenance jobs for bids in the local paper.
JOB DEVELOPER:
The County Board of Developmental Disabilities (CBDD) job developer bid the job. Because of the size of the cemetery, the administration of the cemetery awarded several contracts. (For the five years I was involved, the CBDD got one of the contracts each year.)
Paid Work
The CBDD paid the workers minimum wage from this contract. Each member of the Mobile Work Crew was already on Medicaid/Medicare and the seasonal wages were within the limits of their SSI and SSDI requirements.
The job developer negotiated the details of the contract as well as was the contact person for any problems between the cemetery administration and the board as well as members of the mobile work crew.
Natural Supports
The cemetery provided the equipment. There was a garage-type lounge for all the crews and workers with a table and restrooms. They could mingle with the other workers from other lawn companies (non-handicapped) in the lounge. There was some natural support from the other workers who were doing the same jobs and the same sweating.
SUPERVISOR OF MOBILE WORK CREW
There were six people with disabilities and a supervisor on the crew. The supervisor was a year long salaried employee of the county board of developmental disabilities. She had experience working with people with disabilities and had been trained as a special education teacher. She had total responsibility for keeping the workers safe, happy AND getting the job done. If she needed extra help, she would go to the job developer or her other CBDD staff.
Kim, Aaron’s job coach, was under her supervision (because she was in charge of the whole job) but worked independently with Aaron.
TRANSPORTATION
All the adults with disabilities would be transported from their homes to the sheltered workshop. The supervisor would drive a small van, similar to the vans the other lawn service companies used, from the sheltered workshop to the cemetery and then back to the sheltered workshop for the trip home.
Inclement Weather
On days when it rained, the crew could stay home if they wanted, or hang out at the sheltered workshop. If there was work at the sheltered workshop (usually not) they were able to jump in. If there was no work they could hang out with their friends and play cornhole, bingo or whatever the activity.
JOB DESCRIPTION
Ongoing Support
Before the crew began work, the supervisor and job developer made task analyses of each of the jobs. The individuals with disabilities applied and interviewed with the supervisor. If there was a good match, the training, modifications and accommodations were added to the individual’s Individual Service Plan (ISP).
OVERVIEW: How this worked
Who knew there were mowers about a foot wide which fit easily between the older tombstones? There were four mowers in this mobile crew.
There were two weed-wackers or whatever they are called. (The cords swing around and cut the weeds which the mowers miss.) There was a “task analysis” of each job.
They were trained on the job. (They didn’t practice cutting the concrete in the parking lot to get ready *smile*)
Because the job was repetitive, it was a perfect fit for many of the workers. They knew exactly what they were supposed to do, and after a short time, were independent in many parts of the job.
If any of the workers needed adaptations (shorter hours, more breaks, special gloves or boots…) these were included in their ISPs (Individual Service Plans). Therapists (Occupational Therapist, Speech/Language and Physical Therapist) were available for the initial evaluations/training, if necessary.
Establishing Routines
The supervisor would start the day with some conversation, some joking around and individual attention to each of the crew members. They would get a short break mid-morning, they brought their own bag lunch, and a mid-afternoon break. But most of the day, it was sweaty and hot and lots of hard work—serious business.
The supervisor made sure the crew members had sun-screen, hats, appropriate clothing, solid shoes (no sandals), water….
She also worked side-by-side with the workers. She made decisions to go to another section if a funeral was in progress, if the area was underwater…; she pulled weeds… and did whatever it took to make sure everyone was successful, and the finished job met the requirements of the cemetery board.
Partial Participation: How this worked for Aaron
Aaron, my son with the label of autism, does not have the skills to run a lawnmower or weed-wacker. He would not be able to be part of the mobile work crew of 6 workers who are mostly independent on the job once they are trained. Because Aaron was in the official “transition” from school to work, he was eligible for a job coach from Rehabilitation Services.
So, because he had the physical support of a job coach, Aaron had the opportunity to join the workforce.
Is there some job he could do at the cemetery? Could he partially participate in this work?
After doing an ecological assessment of the job, Kim (Aaron’s job coach) decided Aaron could pick up the sticks before the lawn mowers came. So Aaron and she would drive a golf-cart to the area where the crew was mowing, and then they would collect sticks, dead flowers, and other stuff left on the graves, put them in a trash container tied to the back of the golf-cart and then take it to the dumpsters.
Aaron loved this job. First of all, he loved Kim, the job coach. She made him feel important, she helped him when he had trouble bending over, she helped him put the sticks in the trash container, she helped him wheel the container to the dumpster. Kim, looked at every piece of the job and asked herself, “How could Aaron at least partially participate in this job?”
Plus, Aaron loved riding in the golf-cart. When Aaron did particularly well, Kim would give him an extra long ride around the large monuments.
The side benefits were Aaron made a small amount of spending money, he paid into social security, he was out in the sunshine (with lots of sunscreen) and glowed with health, he was physically strong from all the exercise, plus the emotional benefits: he knew he was contributing, he was part of a group of people who valued his work, he could make all the noises he wanted (and wouldn’t wake up the dead), he enjoyed riding in the golf cart, instead of physical therapy practicing his balance climbing steps to nowhere—he had a functional way of practicing his balance in the real world. He had a great friend and mentor in Kim. It was a terrific experience.
And, for Memorial Day, 4th of July, Veterans Day… Who was the person who put the flags on the tombstones?
It was Aaron.
Trivia too good to pass up: One of the cemetery monuments is enclosed and heated. Yes, the person who died years ago was so afraid of being “cold”–they stipulated in the will that the space above the grave would be heated (including a back-up generator in case the electricity failed.) That is a powerful “fear.”
Keep Climbing: Onward and Upward
All my best,
Mary
Comments:
Do you have any experience working with people with disabilities? Does you company use enclaves? mobile work crews? Have you ever seen a mobile work crew of workers and wondered how it worked? Is partial participation better than no participation? Should people with disabilities be allowed to work?
