Archive for the ‘Transformational Experiences’ Category

Dedicated to Marine Sgt. John P. Huling of West Chester who yesterday was buried in Arlington one week short of his 26th birthday. His mother, Debbie, works with my husband Tom. May, 2012

photo credit: Envios

Ever wonder who puts all those flags on the graves of veterans?

MEMORIAL DAY

Like communities all across America, on Memorial Day our city holds a celebration to remember our basic values. A parade starts at the high school and ends at the cemetery where generations of citizens and soldiers end their life’s journey.

Several years ago, as the sun was beating down to the Sousa marches, our whole family, including my uncle John, sat in our lawn chairs watching the parade of Little League teams, high school marching bands, dance schools, Boy Scouts and politicians in their red, white and blue ties.

The cemetery was beautifully prepared. The lawns were like carpet, the grass on the edge of the sidewalk was so carefully clipped, it stood at attention; the peonies, irises and annuals colored the grounds with reds, pinks, purples and whites. Everyone was feeling damn patriotic.

Everyone, except uncle John. He turned to me and said, “I wasn’t always handicapped.”

“What?” I know I raised my eyebrows and wondered where this was coming from. I mean, uncle John was never a happy person, but since he had a stroke, he was a weary soul. We hoped this celebration would lift his spirits. After all, who doesn’t like a parade?

Uncle John explained, “You know, I was an electrician. I was important, I contributed, I worked in a great hotel for 30 years. Now I just sit here and watch life go by. I’m handicapped and useless.”

Not exactly cheerful parade conversation but I couldn’t resist. “Uncle John, having a handicap isn’t the end of the world. Can you enjoy the parade? Look at those little kids jumping up and down on their decorated wagons.”

“You just don’t understand,” he said. “I’m not like him,” eye-pointing to Aaron, his nephew.

Some Battles Can’t be Won

Since Aaron, my son with the label of autism, was sitting in the lawn chair next to uncle John, I felt I needed to say something.

But I couldn’t find any words.

In silence, we were side-by-side, almost touching–yet thousands of miles away from each other–as we watched the veterans from the VFW pass by in antique cars.

The soldiers varied in shapes and sizes, men and women, veterans from the current Iraq, Afghanistan war to seniors of the war that would end all wars—but didn’t.

The sun reflected off the windshields, and I reflected that our society treasures the antique cars which are worth more now than when new. The old model cars were spit shined and decorated with banners. The old soldiers also wore banners, but many of their faces and bodies were worn. Did our society value them?

Some soldiers were younger than my sons, Aaron and Tommy. But, we all know their youth was shattered in the deserts and mountains of strange lands.

Some of the veterans in the parade carried the labels of “handicapped and disability.”

As the crowd cheered and waved, I had to wonder if these brave men and women would be truly accepted into our society.

Would others, like uncle John, say they were “useless”?

Would they only see the handicapping condition, would they consider these wounded warriors better than Aaron, because they were once whole? Because they were “damaged” fighting for our country?

World War II Story

As the speeches droned on, I remembered a couple stories by Bob Perske. One where he talked about people with disabilities and the war (click here).

And another: Bob said after WWII, a family in London moved into a new neighborhood. Instead of saying their son had cerebral palsy and had the label of intellectual disability from birth, they told their neighbors, “He was gassed in the trenches of Germany.” And in a post-war era of grief and loss, that benign lie made all the difference. Instead of avoiding or shunning the family, the new neighbors welcomed their family into the community. Their attitudes were completely different.

Modern Day Attitudes

During the ceremony, a soldier who used a wheelchair got some sort of award and the crowd clapped. I wondered if our community embraced his family, or did we just give him a token wall plaque on Memorial Day and then segregate, discriminate and ignore him the rest of the year.

Would he get the support he needed to live, work and recreate in the community?

The same questions I often ask for Aaron.

Is one human more valuable than another? Is that what our country stands for? What the soldiers sacrificed for?

Disabled and Yet-to-be Disabled

I often wonder if everyone understand there are only two groups of people in this world–the disabled, and the yet-to-be-disabled?

If we live long enough, each of us will have a disability.

Being Useful, Proving Worth.

People with disabilities are not useless and just watching the parade of life go by.

And then being a good advocate—or crazy person who doesn’t know boundaries or when to quit– I asked uncle John if he noticed how beautiful the cemetery grounds looked.

I told him Aaron worked at this cemetery. He and the crew of people who did the landscaping had disabilities, but if they had the support they needed, they weren’t handicapped and “useless.” In fact, they were the ones who made the grounds look so beautiful.

I pointed to the rows of tombstones which each held a single flag.

I told him that for the last 2 days, Aaron’s job was to place a flag in the holders by each tombstone. And tomorrow, Aaron would go back and remove the flags and save them for 4th of July, when he would again put them out.

Is Aaron useless?

What I remember| Memorial Day:

Uncle John died a couple months later–old, bitter and handicapped. He never hugged Aaron or saw what Aaron could do, only what he couldn’t do.

And, like the day of the parade when he missed the joy, pride and purpose of the Memorial Day celebration, uncle John also missed the joy Aaron brought to anyone who opened their heart.

I think Aaron and I will wave a couple flags tomorrow to celebrate America.

And, I’m hoping that while Aaron was placing those flags in the cemetery, other people were seeing him as a competent, contributing member of our community.

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Come on, I know you want to share some memory of your own Memorial Day Parade, family reunion, attitudes about disabilities and “Handicapped.” Lots of good ideas, let us know what you are thinking.

Related Stories:
Aimee Mullins and Survival of the Fittest

What makes you special? A Soldier story

Do the words disability and handicapped mean the same thing?

Helping or hurting?

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.”

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?

Our Family 1980

Aaron at Piano 2011

April is Autism Awareness Month. For those who are new to our community, I thought I would reprint this post because it talks about important issues. I hope you will feel free to share your thoughts in the comments.

Can I love Aaron and hate autism?

If I say, “I love my child, but hate cancer or heart disease…” many people would say that is okay.

If I say, “I love my son, Aaron. I hate autism.” some people would say that is NOT okay.

So, call me a villain, ignorant, hypocrite, politically incorrect, or whatever–but I refuse to celebrate autism–I refuse to give autism that power.

I gladly celebrate the diversity of individuals. This diversity makes our world stronger and a more interesting place to live.

I love individuals who have autism, just the way they are.

But–I will not celebrate autism like it is a good thing.

World Autism Awareness Day

I found some of the World Awareness Day press curious: “In fact a world without Autism would be a lesser world.” (New Zealand.)

Here is my post about Autism Awareness Day asking people to do more than just wear blue.

The United Nations has established April 2 as World Autism Awareness Day. Great! Let’s talk about autism.

What causes Autism?

Well, no one knows for sure. The “experts” have narrowed the cause down to: environmental, biological, sensory, abuse and neglect, genetic, chemical, neurological, food…and the ever popular–it’s the parent’s fault.

So the short answer is, who knows?

Yesterday someone told me our children have autism because they don’t get enough eggs. Just add that to the list. They might be right.

Dr. Anne Donnellan spent her career working with families and people with autism. She often says, “The more theories, the more proof that we don’t know.” She also gives her version of circular logic in Disability World.

Circular Logic

Parent: My child keeps flapping their hands.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child flaps their hands.

Is Autism the Greatest Gift?

Some advocates want you to think autism is the greatest thing ever. They talk about the special abilities of people on the autism spectrum and say it is only because of autism they have these talents.

Hummmm. Is that so?

Sure Temple Grandin, with a glance, can tell how many nails are needed to build a livestock yard–but is that only possible because of her autism?

Rainman could count the number of toothpicks on the floor. Is it possible there is someone else in the history of the world that could also do that?

Are we again caught in circular logic?

Parent: My child can count the number of nails or toothpicks.

Doctor: Ah, that is because your child has autism.

Parent: How do you know?

Doctor: Because your child can count the number of nails or toothpicks.

There are some people with the label of autism who can tell you the day of the week for every calendar year in recorded time.

I can’t. Probably you can’t. But, is it possible there is at least one other human being without the label of autism who can?

The Guiness Record books are full of typical folks who can do all sorts of incredible tasks.

Hurry, quick. Do we now need to give those persons the label of autism?

There are some who are going back to past genius’ and claiming they must have been autistic…Mozart must have had autism. Disney perserverated on those mouse pictures–he must have had autism….

Couldn’t Temple Grandin just be a talented person? Isn’t it demeaning to say, “No, Temple has nothing to do with it, it is only because she has autism.”

Is it possible the statistical increases in the number of people with autism is partly due to our current scientific paradigm of labeling and sorting people? And some people promoting “autistic envy”?

What is normal?

Well, turns out we don’t really know that either.

Sure we have tests, but anyone who studies IQ or other quantitative or quantitative measures will point out the flaws.

Multiple Intelligences| Howard Gardner

Howard Gardner, studied people with autism who were labeled as autistic savants (actually “idiot savants” was the term used at the time). He was able to identify at least eight different kinds of “gifts or intelligences.” Now, in every school in the world (that uses best practice) his theory of multiple intelligences helps all children learn. Gardner says each of us has all these eight intelligences, some are just more developed than others.

This is one of the side benefits of autism. Without the diagnosis of autism, the scientific community might have had a harder time making this discovery. Science needs large groups.

Could it be we all have gifts and traits of genius, gifts and traits that could be labeled as autistic? Are we all a little autistic?

Stinkin’ Thinkin’

So, what’s the deal about autism? Can’t we just celebrate individual diversity?

If we really believe autism is a tremendous gift, then it would be logical for each parent to wish their child would have autism. Right?

I once went to a conference for people with Down syndrome. Everyone kept talking about how people with Down syndrome were the happiest people in the world–how glad they were to have their child in their family. They used examples like, “They will always believe in Santa.” “They are pleased when I fix them chocolate milk.”…

Using circular logic:

Parent: I want my child to be happy.

Doctor: Children with Down syndrome are happy.

Parent: Then I want my child to have Down syndrome.

So, if we want our children to be happy maybe we should try to figure out how to add an extra chromosome to our babies DNA.

If autism makes us gifted, maybe we should be researching how to make 100% of the population have autism–add autism magic to our babies’ lives.

This kind of thinking is just nuts, yet it is common in each area of disability. Stick around Disability World and you will hear people yearn to have the courage of people with cystic fibrosis and muscular dystrophy, be sexy like people with cerebral palsy….

Okay, I understand some advocates are probably hyperventilating at this point. How dare I talk this way about people with autism and Down syndrome?

The person who gets joy in Santa, or in having chocolate milk is an individual. Each individual person–even if they have a label– is different.

We can love the individual–not the disability.

As family members, friends and as self-advocates, we can value the individual person’s talents, gifts, joys and sorrows. We can see them in the context of their environments–but, we don’t have to give all the power and credit to the label of disability. The individual should get the power and credit. They are the ones who are who they are.

I can love my Aaron–I don’t have to love autism.

I can see Aaron’s gifts and talents–I don’t have to think they are only because he has the label of autism.

Aaron is a loving person who makes kissing noises as I turn out the light. He smiles when I pull on the toes of his socks. He gives me hugs when I walk past him. He is patient as I try to figure out what he wants. He concentrates on his books and loves pictures. He gets excited when I come in a room. I love when he relaxes in his bath. I love when he initiates a song or going to the bathroom. I love when he figures out how to eat the cheese off my sandwich….

Aaron is unique. He adds his own version of diversity to the human family. He is a great son, brother, uncle, friend… just the way he is.

Autism sucks. Aaron doesn’t.

Autism affects each person differently.

In Aaron’s case, Autism means he can’t talk with words. It means he is 36 years old and can’t always tell when he needs to go to the bathroom. It means he has trouble making friends. It means he yells in public restaurants. It means he has motor difficulties and has trouble walking–crossing from the rug to a tile floor. It means he is always afraid of falling and losing his balance. It means he bites his hand to calm himself. It means it takes him a long time to learn things. It means he will forget them if he doesn’t practice them every day. It means he likes music, but not loud noises. It means he likes to be moving (in cars, buses, boats, planes…) It means he likes to swim, but not bend over. It means he can’t tie his shoes or dress himself independently…it means he cannot be left unsupervised even for a minute.

That all sucks.

I wish it was easier for him. I wish it were easier for me to help him.

But all those difficulties don’t mean I don’t love Aaron with every fiber of my being.

Each day for the last 36 years, I work to get Aaron the support he needs to live, work and recreate in his community. To allow him to be the best person he can be–For him to be able to make choices and have opportunities he wants.

There is a difference.

Dream Plans for Aaron Ulrich

I am adding our dream plan for Aaron. You can click on each of them and see I am NOT trying to cure Aaron. I am NOT trying to make him a different person. I love and respect him as the person he is.

I am NOT trying to make him the person I want him to be.

The first one we wrote in 1981 when he was 6 years old. Dream 2: 1989 The next Dream 3: 1998. And, Dream 4: 2010 which I wrote last year.

Every day Aaron teaches me about courage, love, and tolerance. But he knows he can count on me, my husband, and his brother. He knows Annie, his caregiver will do her best to look out for him. He knows his housemate Jack will be there for him. He knows his grandma and extended family including Ana and his niece love him just the way he is.

And until our dying breaths, we will do our best to make his life happy.

No, I’m not going to inject Aaron with an extra chromosome to make sure he is happy. No, I’m not going to give this thing we call “autism” supernatural powers to dominate his life.

But I will give him opportunities to make choices about his life as best he can–in spite of “autism.”

Yes, I can Love Aaron and Hate Autism.

Autism Awareness Day Marching On

Celebrate each wonderful individual person you meet in this video.

Keep Climbing: Onward and Upward.

Mary

Comments:

Are you sitting there thinking, “she just doesn’t get it?” Are you upset? Do you agree? Do you think “Disability World” thinks different than “The World”? Can we separate the individual from the label?

Crossing the “yet”

Ed Roberts was an amazing guy. We were both on the TASH board and I got to spend some time with he and his son (pictured). Click on his name and see his incredible accomplishments. Ed was into action, not words. He was asked to be one of President George Bush’s “1000 points of light,” which he declined calling it Bush’s “1000 points of hype.” When he died, his wheelchair was donated to the Smithsonian. One of Ed’s quotes was:

There are only two kinds of people in the world: the disabled, and the yet-to-be-disabled.

This past year, my husband has had some heart issues and I’ve struggled with sciatica. Because my back pain’s not going away (even though I’ve had the lumbar shots, physical therapy…) we decided we needed to move to a ranch house.

And true to Ed Roberts’ prediction, I have crossed over the “yet” and am now starting to see the world from the “disabled” point of view.

Of course I’ve always seen what worked and didn’t work for Aaron, my son with a severe disability. But even with that knowledge and experience, now it is more personal. It is me. And it is shocking.

Boomers and Housing “thought leaders”

First of all, the housing market is filled with two stories; split, tri and quad levels but few ranches. The ranches that are available were built in the 60s. So they have old plumbing, bathrooms the size of postage stamps, and some even have steps. Yep, steps to get to the one-floor plan.

As we boomers age there is a scarcity of accessible housing. Sure there are some new patio homes but they are pricey and often in “mature” neighborhoods. Sure there are condos and apartments with elevators in crowded senior high-rises. Sure there are retirement communities which are basically segregated facilities–beautiful, but still segregated. Isn’t that what we have been fighting against for the last 30 years?

So, what to do?

Next week my husband and I are putting our multi-level condo up for sale. We figure in this market, it is wise to sell first and then buy. But as we go through potential houses, we are not finding anything appropriate. Where is the diversity? Where are the neighborhoods where ranches are mixed with multi-level houses? Where are the neighborhoods where seniors and young families can live together?

Universal Design

Universal Design has been around for a long time, where are the houses built with this concept? Why have the builders not used state-of-the-art thinking and technology?

I wish Ed were still here to make a joke and put things in perspective. I wish Ed were here to share his wisdom and spirit. Fact is, I just plain wish Ed were here.

And once again, I am reminded of my own aging and mortality. And that is another shock.

I never used to have friends who were dead.

In some ways I am lucky, I don’t carry many of the fears and superstitions of the previous generationI know about the difference between having a disability and a handicap (see post). I know how to advocate for my needs.

As I think about my own passage into the world of disability, I feel more prepared. People with severe disabilities have led the way. They have taught us to strip away all the frills and find the core of what we need. They have helped us learn about interdependence, adaptations and accommodations, systems of support, circles of friends, partial participation and community involvement.

They have taught us what is important–to be surrounded with people who love and care about us.

So, Tom and I will figure it all out. We will use the advocacy and problem-solving skills Aaron and others have taught us.

I remember when one of our relatives had a stroke. He would complain verbally and non-verbally, “I’ve only been like this for a short time” (I used to be independent and able to walk.) He would explain to everyone who would listen, “I didn’t use to be handicapped. I was an engineer.” (I had worth.) “Aaron is too close he might step on my foot.” (I’m damaged now, but I’m not like him, once I was whole.) He did not want to be near Aaron. He never put his prejudices into an actual discussion, he just always had this attitude about people with disabilities–and by god, he wasn’t one of “them.”

We have worked so hard to change people’s attitudes about people with disabilities. The next generation of children has had personal experiences with people with disabilities in the schools and community. But maybe the bigger lesson is that learning to be more tolerant about others, will make it easier for us to be more tolerant of ourselves. Hopefully, part of our learning about differences will ease the process of getting older.

We are all the same on the inside. We all need to be loved, safe, happy and give to others. That doesn’t depend on what our outer body looks like. That doesn’t depend on what side of the “yet” we are on.

I think these lessons will serve me well.

ps. Anyone looking for a great condo?

Please share your thoughts in the comments.

Are you offended with Ed’s quote, “There are only two kinds of people in the world: the disabled and the yet-to-be-disabled.” Do you think this discussion will help us as we age?

Keep Climbing–Onward and Upward

All the best,

Mary

This story is from 1981 when Aaron was 7 and Tommy 5. We were in the middle of our lawsuit against Cincinnati Public Schools to allow Aaron to be able to go to public school. Enjoy.

At the end of our street is a pond. Our family often takes walks down there to see the ducks and give them bread crumbs. One day last summer, an old man was down there and said: “Did you see the handicapped duck?”

Well considering I was pushing my seven year old son with a severe disability in his stroller, and considering the 24 hours a day I spend thinking about people with disabilities–this was really too much.

The friendly man went on, “Probably a frog ate his foot or maybe he caught it on the fence…”

Sure enough, there were about 40 ducks and one duck was missing his foot and about one-half of his leg. The duck hobbled toward us but when Tommy tried to pet him he scrambled for the bread crumbs with the rest and then swam away.

Before we left, we did throw him some extra bread crumbs just because we wanted him to know we were friends who understood life’s little extra challenges.

I went home and joked to my friends that at least some humane society didn’t come and set aside a special pond for disabled ducks, start a supplementary training program and segregated nesting area–or some exploiter didn’t take him to Utah and enter him in some freak show for tourists.

We checked in once in a while over the winter, but I really was a lot more worried about people with disabilities than the ducks. We were trying to mainstream Aaron, into a public school. (This was before “inclusion” was thought possible.)

Yesterday the weather was warm so we walked to the pond and saw there were only about 15 ducks. We were only there a minute when that same man came running down full of concern. He told us someone was catching the ducks, putting them in plastic bags, throwing them into the middle of the lake and then watching them drown.

We were shocked. Who would do such a thing?

Meanwhile, the few ducks that remained came swimming toward us looking for the bread crumbs. Guess What?

The “handicapped” duck was among the survivors.

I’m not sure what this all means or why I thought to write about it, but with all the cutbacks and anything else they can think up–I think the duck gave us a message–we’re going to make it. There are some mean horrible people out there, sure. But there are also wonderful people like the man who cared for the ducks. There is risk being in the community–but that is also where there is safety.

This week Aaron learned to peel his own banana, he went boating and he saw a “handicapped” duck that was smarter than the non-handicapped ducks. We also just need to get smarter.

The dream… it lives!

Quiz: For those of you who read the story about the difference between disability and handicapped (click here) and tell me. Did our duck with the one leg have a disability, a handicap, or both?

Share your Stories of Hope

What helps keep your dreams alive? Any duck or pet stories?

The “R” Word: A Challenge to Bloggers.

Stop the “R” Word

March 7, 2012 is designated “Stop the ‘R’ Word day. If you go to their website they have many ideas for activities and actions. If we each do one thing, we can make a difference for the future of our children. Please share your thoughts and actions in the comments.

David Hinsburger and the “R” word.

David Hinsburger is an award-winning author and advocate for people with disabilities. His article titled: The People who “ARE” the “R” Word is a must read classic for anyone who doesn’t understand what the fuss is all about.

Sticks and Stones and names hurt

My Letter to a Major Blogger

As promised in my post “Definitions of “Retarded”, this is the letter I wrote to a major blogger when he used the words “retarded” and “idiot” in one of his posts. It is edited for this post.

Hi _____,

I have followed your blog ____ for a long time and enjoy your stories, ideas and writing style. However, I have issues with your use of the words: “retarded, idiot, moron and imbecile.”

You have made strong statements about using whatever words you want–even if they offend people and hit their hot buttons.

You can use words like “idiot, moron, imbecile, crip, tard…,” but why?

I agree this is America and defend your right to freedom of speech. I agree people who find these words offensive can just unsubscribe. But… you are a smart and thoughtful person. Why would you want to purposely offend vulnerable people?

I would rather believe you don’t understand how much these words hurt.

Mental Retardation–two words that matter.

My son has the label of “mental retardation” now called an “intellectual disability.” Because of those two words, he was not allowed to go to public school.

Because of those two words we had to spend three years in court, costing thousands of dollars. We, along with other parents, had to prove our children were human and had the right to “life, liberty and the pursuit of happiness.” We had to prove in court that our son would benefit from being around other people and his mere presence on the school grounds would not harm other children. Because of those two words he was not allowed to participate in swimming lessons with the other kids in our neighborhood PUBLIC park. Because of those two words our family has been refused to be served in a restaurant and a Doctor refused to have our son for a patient…need I go on?

But our problems were minor compared to people with the label of intellectual disability in the past.Parallels in Time: A History of People with Disabilities

Just a generation ago, because of those two words, people were treated as animals instead of humans. They were sterilized, given doses of radioactive materials in their oatmeal. They were taken from their families (“for their own good”) and warehoused in inhuman institutions. Some were not given clothes and had to sleep on straw. They were denied even the most basic human rights–all because one psychologist in one situation gave them one test and labeled them those two words.

Most history books have made people with disabilities invisible. So, you probably aren’t aware, but the words: “moron, idiot and imbecile” came straight from the medical manuals of less than 40 years ago.

There are still churches which will not allow people with the label of those two words to marry, some churches do not even allow “those” children to attend their services or receive the sacraments. Many private schools and churches legally still segregate and discriminate against our children with those two words.

There are many normal couples who joyfully want a baby–until they hear those two words, and then immediately abort. There are Baby Doe cases where if the baby has Down syndrome and is assumed to have mental retardation, the family refuses to take the baby home from the hospital and refuses to allow the baby to have food. There are cases of “wrongful birth” where the parents sue the Doctors for allowing their child with “mental retardation” for being born.

In 2012 we can add the case of baby Amelia Riveria who was refused a transplant because she had an intellectual disability. The hospital has recently apologized.

“Mental Retardation, retard, retarded” are not funny words”

In Ohio, the state legislature passed a bill in 2009 to remove the words “Mental Retardation” from state agencies and its documents. This was the work of numerous advocates and thousands of hours of public hearings.

This is a civil rights movement where we are fighting for the right of our children to live, work and recreate in the community. The right to be seen as human beings and citizens of this great country.

Sticks and Stones … and words can hurt.

When a label carries enough stigma that the label alone can cause discrimination–the label is a problem.

The civil rights movement of the 60′s laid the ground work for Sec. 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act…. and our civil rights legislation, The American with Disabilities Act (1990). If you look at the closing statements in Brown vs. Board of Education (1954) you will see the school district’s argument, (paraphrased) “If you let negro children in the public schools, the next thing you know the school will have to educate retarded children and Indians.”

In 2012, our children have the right to go to public schools, and restaurants cannot refuse to serve us, or ask us to leave because they don’t like “the way we look”.

This is NOT ancient history. This is NOT some group of radical parents and advocates who just want people to be politically correct.

Churches, non-public schools and organizations can still discriminate and decide who they allow in their churches but because so many of our children are going to school and living with their families in the communities, there is not the fear that once existed. And the medical professionals have dramatically changed their low expectations and acknowledge the limits of the IQ test and other measures they used to label people.

Sure this came about because of civil rights court cases and federal legislation, but mostly it happened as decent people decided to give people who were different a chance. I know it is unpopular to say that the Federal Government and Laws are important. Many people say there is too much government. I wish there was more protections and enforcement for vulnerable people.

Challenge to Bloggers

My challenge to all bloggers is:

Will you take cheap shots and continue hateful language which hurts people? Or, will you use respectful language and recognize people with intellectual disabilities are people and at least give us all a chance to build a better world.

Words have power. You have power.

Will you use your power to continue to hurt people, or for change?
I know you didn’t mean to hurt anyone, but for those of us (like me) who have children with IQs below 50, children who were labeled “idiots” by our Doctors and medical professionals and who are struggling every day to try and make a better life for our children, the words: “retarded, idiot, moron, imbecile” are downright offensive. So forgive me that I rant today instead of ignoring it.

I know the words are used everywhere and people aren’t particularly trying to hurt people with intellectual disabilities but I would appreciate your consideration.

Thanks. Mary

The blogger I sent this letter to agreed to not use the offensive language only asking that he remain anonymous. I consider that a victory for all of us, and it has made me a loyal fan.

Rosa’s Law

Rosa’s Law was passed and signed by President Obama in 2009 to use People First language in all Federal documents. Love, NOT Labels| Rosa’s Law

I am hoping other bloggers will take up the challenge and use People First language and the words “intellectual disability” in a respectful way.

This is a fresh start. We can do it right this time.

What about you?

Will you take the challenge to remove the “R” word and other hurtful words from your vocabulary?

Will you help educate others who use the words?

Will you learn more about PEOPLE FIRST LANGUAGE?

Talk to me in the comments. Let me know what you are thinking.

Keep Climbing: Onward and Upward.

Mary

Related Posts:

“Retarded” Keywords

Remarkable Parents who Never Give Up

Happy Feet, Retarded Teeth and Carnival Goldfish

Retarded| No More

Norm Kunc| What’s Your Credo?

People First Language| Building Community, “Wheelchair Becky” and Smoky Woods

We have a house!

Amazing News: A House and Roommate| Part 12

Miracles Do Happen:

Last week, a non-profit agency bought a house near our home. They will accept Aaron’s HUD housing choice rent voucher.

Today, we met with a young man and his mother and we think we found a roommate match.

Miracle Triangle:
House/HUD–Roommate–Residential Staff

For those of you who have been following our journey to move Aaron, our son with the label of autism, home to our county, this is Part 12. You know how complex and difficult this has been. Here is the link to Part 11: 1st miracle| Aaron needs a Roommate| Part 11.

Even with the two miracles, don’t breathe yet. But we now have two pieces of the triangle in place.

The third part of our miracle triangle is great staff. I’ve talked about the critical importance of staff in Caregivers: Part 1, 2, 3

But as Scarlett O’Hara says, “I’ll think about that tomorrow.”

Here are the details in two emails: one from early this morning (2:30 AM—mothers never sleep); the second is after our dinner meeting (9:00 PM—mothers put in long days).

Task Analysis for Monday Morning:

From: Mary E. Ulrich [mailto:marye.ulrich1@gmail.com]
Sent: Monday, September 26, 2011 2:28 AM
To: Everyone I could think of who might be part of this move
Subject: Aaron’s house

Hi Everyone,

I met with the director of the non-profit on Friday. He said they closed on the new house last Monday and so we can begin the countdown to a move-in date of Nov. 1. Yea, Yea!

Thanks to the Non-Profit and the County Board of DD for making this new resource available to Aaron and our community.

So now there is much to do to be ready by Nov. 1st.

HUD

The director of the non-profit is finalizing the paperwork to become a HUD landlord in W. County. There will need to be an inspection and he is negotiating the rent…. As soon as we get Aaron’s roommate, we will be applying for three people and a 3 bedroom subsidy (Aaron, roommate and caregiver.) This is what Aaron has had in our past County for the last decade, so I think this should be pretty cut and dry. It is an accommodation under ADA, but is different than the rules for HUD’s definition of “caregiver.”

We have received HUD extensions until Oct. 31st. It has been a lot of running around between counties, but Debbie and Wendy have both been wonderful caring professionals. Thank you for helping me figure out the system.

Notices

I need to give notice to everyone in our current county and the current provider by Oct. 1st, which is fast approaching.

I’ve given the notice about moving to Aaron’s current landlord.

This will not come fast enough. Aaron had another “unusual incident” last week where he was not groomed for his day program. (The food he got in his hair on Monday was still there on Wednesday—the staff felt he had not had his hair washed in two days and it was dirty and grimy.) Also, Aaron is running out of transportation money to his day program.) Tom and I are taking Aaron up on Monday mornings, and usually picking him up one afternoon a week.

House Remodeling

The director of the non-profit says they closed on the house last week and will begin the remodeling shortly. They are starting with some tree trimming because of the possible danger and then will refinish the floors in the Living Room, Dining Room and move on to the bathrooms. If everything works out well with HUD and we get the caregiver’s designation for the third bedroom then there may be enough rent money to justify new windows (the current windows are casement windows—inefficient and BAD). They are reluctant to begin the bathrooms until we know who the second roommate will be. This makes sense if we want to make accommodations which are specific to the person needing the bathroom.

I think this is a great way to begin because we will want to show the community we will be great neighbors and take care of the house before the rumors begin that two men with intellectual disabilities are moving in. This is what worked on Aaron’s current residence and I have too many memories of Stetennius, Five Mile and other hearings from worried neighbors. It is a mature neighborhood, I don’t expect any problems, but we want to make a good first impression.

Tom and I will be planting some mums and have a couple inexpensive porch chairs to make the place look lived in. The house has been vacant for a long time so a few improvements should impress the neighbors.

Potential Roommate

I am hoping to hear from the parent of the potential roommate today, and then can set up some visits. This is the next big step.

Then, I understand from the new county board, we will finally get a case manager.

Transition for Aaron

We have been driving Aaron by the house and telling him it is his new home, but I can’t imagine he understands what we are talking about. I’m worried he will miss his roommate of the past 13 years and am sure he will be confused. I want to start some visits to the house as soon as possible. The more familiar he is, the easier the transition.

I’m hoping he will get to have a couple meetings with the new roommate and new staff as soon as possible.

Furnishing House

We also need to figure out how to furnish the house. I have begun to take donations from relatives. We probably have about $1000 set aside.

Tom and I furnished Aaron’s first two residences. We are told that if the furnishings belong to Aaron he can take them with him, but I am uncomfortable just taking the silverware out of the drawer and telling them, “Sorry, this belongs to Aaron.” We have enough problems with the current staff as it is and we don’t want to cause problems for Aaron’s current roommate. But, it is expensive to start a new house from scratch.

My family will be having a shower to donate items sometimes this month. I will have to coordinate with the director of the non-profit when we can get a key and get into the house and it’s not a Bengal’s game (if there are any Bengal fans left in Cincinnati by then).

I’m hoping we can set a corner of the garage or one bedroom to begin collecting items.

I began with a couple boxes in Aaron’s current residence and the staff (without permission) gave them away. “What would you do? Case of trash vs. treasure”. (I’m still VERY upset about this. Just add it to the list of why I want to get away from them ASAP.)

New Agency

Next week I will begin interviewing residential providers. They will need to hire and train staff by Nov. 1. We have met 3 different providers as we visited the 3 potential placements for Aaron. One company impressed us because it was a local company in Mason, but we are open to suggestions. Please email me ASAP. We are well aware that just because a company was good last month, doesn’t make it good this month. Having caring staff will be the second most important variable, after a good roommate.

Well, we have a busy week ahead. Please say a prayer we sell our condo, it is a huge strain on us. We listed it with another agent last week. We have begun to move some of our things into our new condo.

I’m hoping by Christmas we can look at both Aaron and us in our new homes and know we are in a better places, but GEEZ, it’s going to be an action packed couple of months.

Thanks to everyone for helping make this happen for Aaron. Maybe the Bengals could learn from all our teamwork

Any questions please let me know. Have a great week. Mary

About 1:00 PM, the mother of a young man who might be a prospective roommate called on the phone. That went well so we picked up Aaron at his day program and all met for dinner in a local restaurant.

Email to same group at 9PM.

Tom and I always felt one of the most important steps was finding a good roommate for Aaron. We think we have found a good match.

Aaron, Tom and I had dinner with Jim and his mother, and it went very well, so we would like to move forward.

Jim was very friendly. He is the kind of person that hugs everyone and is best friends with everyone in a couple minutes. He has a devoted mom. Aaron kept looking at Jim. I wish he could speak and tell us his thoughts, but he seemed happy. Jim likes to swim and go to King’s Island—both things that Aaron liked to do in the past. Hopefully, they will be able to do many activities in the community.

By Providence, or some divine plan, or dumb luck…Tom and Jim’s mother actually taught at the same school together and used to talk about their kids at lunch. Pretty amazing, eh?

So, if everything works out—drumroll please– Aaron and Jim will be roommates.

HUD

Jim’s mother is going to call Wendy at the HUD office tomorrow and see what we need to do to get Jim on Aaron’s list. So we will have 3 bedrooms and Aaron, Jim and the caregiver will make three. So, hurrah hurrah.

Also, yesterday the non-profit started painting rooms and beginning the process to get the house HUD approved. So we are really moving forward. It is hard to believe—this is going to happen.

Medicaid Waiver

Aaron and Jim both already have Medicaid Waivers at appropriate levels. So we can begin the transfer of Aaron’s waiver to our new county and start interviewing residential providers.

Finding a good staff will make our miracle triangle complete: (House/HUD—roommate—staff).

Furnishings

My sister Janet, visiting from Kansas, had a friend donate our first items for the house. The director of the non-profit allowed us to begin to put them in the garage.
The painters were there to let us in….
Today went so well, I think I’ll go buy some lottery tickets.

Thanks to everyone who is helping us climb our mountain and move forward. It takes a village….

Mary

Keep Climbing: Onward and Upward
All my best,

Mary

Comments:

Hope you’ll share your thoughts and experiences. I’m happy and exhausted and I know we are only about half-way on the move-in journey. Whew! Now on to making a task analysis for tomorrow. Whew! Whew!

Inclusion for Moms| Sisters of the Heart

When Marsha Forest, Judith Snow, Jack Pearpoint and Father Pat started spreading the gospel of inclusion, they talked about the ABC’s Of Inclusion.

A = Acceptance
B = Belonging
C = Community

I’ve spent a lifetime learning and working for inclusion for Aaron, my son with the label of autism, and other people with disabilities.

But as hard as it is to create inclusion for Aaron, it is also just as difficult for parents to have inclusive experiences. Moms, Dads and Family Members are always being segregated into “special” groups… Special Olympics, Autism Speaks, Arc, TASH….

My Circle of Friends

Inclusion for Moms

Four years ago, I stumbled across an ad in our community newspaper about the Lori Foster Gathering for Readers and Writers. The “Gathering” was at a nearby Marriott Hotel and looked interesting. Plus, it had NOTHING to do with disability issues.

It became a transformational experience in inclusion–NOT for Aaron, NOT for Aaron’s mom, but for me.

ACCEPTANCE

Over 300 authors and readers of romance novels were gathered around tables in the conference room. Decorated baskets were being raffled and authors signed their books. Books were everywhere.

Many of the women were in costumes that corresponded with the themes of their books. They wore cat ears and tails, fairy wings, Victorian hats and jewelry, pirate and cowboy hats, wedding veils, capes, Hawaiian flowers in their hair… They were young mothers and white hair grandmothers. They were unpublished and New York Time bestselling authors.

I learned “romance” novels ranged from: sweet to exotic; contemporary to historical; “All-American” to English royals to Scottish highlanders to space aliens to vampires; time-travel, mystery, suspense and even inspirational tales of the Amish…. Who knew?

Hey, I guess if these women could dream up relationships with werewolves and fairies, they could accept anyone—even a plain old mom who’s got a kid who isn’t “normal.”

I was accepted.

BELONGING

In the first couple minutes, I was embraced as an old friend. It was that easy. I sat down and was welcomed into the group.

I didn’t have to join a committee, volunteer or sign any oaths of allegiance. I was okay just the way I was.

Some authors published several books a year. Several published none, but bought and read books—thus supporting everyone as loyal fans. There was a continuum and only support–no competition.

In “disability” conferences, there was stress. I was always looking for help for the current disaster in Aaron’s life.

There was always a pending national crisis: Special Education was losing funding; someone just died a tragic death in an “institution”; an amicus brief had to be written for an innocent person on death row; signatures were needed for some campaign or new legislation; some non-profit was going bankrupt…. There were always a hundred heartaches. Sure, there were people who supported each other—but they were often just keeping their heads above water.

SHARED INTERESTS

One of the requirements of making friends and community connections is about “shared interests.”

The women at my table shared stories of their favorite authors and books. They pointed out Lori Foster and Dianne Castell, the organizers. They gave me books from the “trading library.”

There were national issues about publishing, I met a woman who had been kicked out of the national RWA organization ten years ago because she wrote an “ebook” when only print books were considered legitimate. Changing paradigms is difficult, leaders struggle in every field.

But, there were no tears or gut-wrenching stories with no solutions. As the authors spoke of their writing, they added information about their family lives in Canada, Texas, California, Vermont or where they lived, but they were happy people. They had the usual family dramas, but that was not the focus of why they were in Cincinnati. Several people had family members with labels and disabilities, but the conversation was about writing and publishing–not a single IEP issue.

And, I belonged.

COMMUNITY

Proximity

People being together in the same place is another requirement for making friends and community connections.

The members invited me to join The Ohio Valley Romance Writers of America (OVRWA) chapter which met the second Saturday of each month. This became the highlight of each month. Each meeting had veteran writers giving clinics and informational sessions on branding, plot development, submission guidelines…. Though we socialized after, this was a serious professional group of writers. Some were stay-at-home mothers of young children, but there were lawyers, college professors, nurses, teachers…. Sometimes we would meet for a “Girls Night Out” or go out after the meetings.

Nothing against the “Mothers of Special Children” or the “Lakota Parents of Special Education Students” groups, but this was the closest to “normal” I’d ever experienced.

Sisters of the Heart

I thought of true stories of friends and relatives meeting their spouses, and decided to try my hand as a romance writer. What a joy to be thinking about happy stories, rather than writing about the autism wars or inclusion battles.

I started to learn everything I could about writing and publishing. I entered and judged contests, went to a writer’s conference in Columbus, local workshops. I was getting new skills…and new friends.

When I went to the Lori Foster Gathering the next year, I was an editor of a small e-publisher and had close friends in the Ohio Valley Chapter.

It was the first time in my life I was included, and it had nothing to do with disabilities. I was a person-first. Imagine.

I want a Happy-Ever-After

Last weekend was my fourth Lori Foster Gathering. There were 400 people from all over the continent. Proceeds from the basket raffles went to soldiers in Afghanistan, a pet shelter, and a local non-profit. We raised around $10,000.

And, we had a ball.

I laughed and cried. I talked about books, authors and only occasionally about Aaron. I actually went out to a restaurant and didn’t get home until almost midnight. I relaxed.

Many of my friends are now published authors. I’ve watched them grow and bloom. I’m so proud of them.

My core group of friends encourages me in my own writing and in my life as Aaron’s mom. They know some of Aaron’s story and our continued struggle as we try to find a home for Aaron, try to figure out the government regulations and funding. They read my blog (hi everyone) and are my biggest supporters as they retweet and spread the message on social media networks. Their questions help guide the information I give. We “inclusionists” often only talk among ourselves–what an irony. They help me spread the real message of inclusion to just good folks who live in our communities.

They are friends… and in the process have become sisters of my heart.

After all, “my people” know about more than just romance. They know about love.

They know the A, B, Cs. They may not be able to give a definition, but they know about inclusion.

They might call themselves writers, but they are also healers and teachers who are helping me find the land of “happy-ever-after.”

Keep Climbing: Onward and Upward

Mary

Join in the discussion

What do you do to “include” yourself in the community? Are you a member of any social groups…? Do you agree parents and professionals often segregate and isolate themselves in the struggle for inclusion? Have you read any good “happy-ever-after” stories lately? Will our children with autism and other disabilities also find “happy-ever-afters”?

Related Stories:

Happy-Ever-Afters| Rangers and Kick-ass Aikido

Building Community| Wheelchair Becky vs. Flat Stanley

A Parent’s life| Thinking, Worrying plus Actions

Balancing my child’s needs and mine.

Tracy and Larry in Japan

Wretches & Jabberers Is A Nationwide Hit!

Wretches and Jabberers is a movie about Tracy Thresher and Larry Bissonnette, two men with autism, as they embark on a global quest to change attitudes about disability and intelligence while promoting the importance of presuming competence.

Wretches & Jabberers opened nationwide on April 2nd in 10 U.S. cities: New York City, NY; Los Angeles, CA; Washington, DC; Philadelphia, PA; Kansas City, KS; San Diego, CA; Denver, CO; Dallas, TX; Columbus, OH & Miami, FL. Six of the 10 cities SOLD OUT, while others were at near-capacity!

GREATER CINCINNATI April 16.
Wretches and Jabberers will begin at noon on Saturday April 16th at the Newport on the Levy AMC Theatre. To buy tickets for Saturday’s show or other cities click here.

Nora Jones, Carly Simon, Judy Collins and more…

If you can’t attend the movie, perhaps you can still support Autism Awareness Month and The Autism Society.Click here to BUY THE SOUNDTRACK ON ITUNES I have also heard the Soundtrack is available at Barnes and Noble Stores.

The soundtrack features 20 original songs written and produced by J. Ralph in collaboration with: Antony, Devendra Banhart, Paul Brady, Bonnie Bramlett, Vashti Bunyan, Martin Carthy, Judy Collins, Lila Downs, Vincent Gallo, David Garza, Ben Harper, Scarlett Johansson, Nic Jones, Norah Jones, Leah Siegel, Carly Simon, Stephen Stills, Ben Taylor & Bob Weir.

Carly Simon: The Letter

“I’ve spent a lifetime trying to get in touch”

LYRICS: The Letter

Did I tell you
Sorry it took so long
I’ve spent a lifetime
Trying to get in touch

Just wrote you a letter
For the very first time
I mailed it to you
Did it arrive

I keep a diary that no one can see
It’s got no gold key or paper at all
I filled those pages through all my ages
With all that I’ve seen and all that I’ve learned

I wrote to tell you
Today I got a dog
I named her Hazel
Just like your mom

She loves swimming around
Out there in the fog
She’s really happy
She reminds me so much of you

I keep a diary that no one can see
It’s got no gold key or paper at all
I filled those pages through all my ages
With all that I’ve seen and all that I’ve learned

Check out what people have been saying about Wretches & Jabberers:

Gerardine Wurzburg’s Wretches & Jabberers may be the best film you’ll see on a subject you probably want to avoid — although you’d be wrong about that. Yes, it’s a documentary about autism but it’s also nearly perfect in doing what an advocacy doc should do: show rather than tell, entertain rather than preach. If this is your first exposure to the world of autism, it will be an eye opener. Kirk Honeycutt, Hollywood Reporter

When Tracy Thresher has something to say, he uses his right index finger – and a special computer that gives voice to what he types. Hunched over the device, he begins. Tap, tap, tap. Tap, tap, tap. Tap, tap, tap, tap…. Autism silences the 43-year-old Vermont man. He doesn’t speak. But he has a message for the world about how people should think of people like him. So he taps it out.”To think intelligence, even if you see wacky, goofy behavior. We are simply intelligence, shown in a different way,” comes the robotic voice, broadcast out of his computer… John Curran, Associated Press

Wretches and Jabberers Explodes Myths About Autism.

The new documentary Wretches & Jabberers follows the journey of two autistic men—Larry Bissonnette, 52, an artist; Tracy Thresher, 42, an advocate—as they travel the world, attempt to banish the myths about autism, and reveal its global face. PARADE spoke to the pair behind the film—Academy-Award-winning director/producer Gerry Wurzburg and co-producer Douglas Biklen, Dean of the School of Education at Syracuse University. Joanne Chen, Parade Magazine

Wretches and Jabberers is a buddy movie, a road trip movie and a moving adventure. But this new film is different than your typical mainstream fare. The documentary stars two autistic friends and advocates who do most of their communicating through typing. The story follows Larry Bissonnette and Tracy Thresher, as well as their assistants Pascal Cheng and Harvey Lavoy, as they travel around the world, meet other autistic people, and advocate for autism rights. John Hockenberry “The Take Away Radio Show.”

For more information about Wretches and Jabberers read The Right to Communicate Part 1

And Larry’s Blog with more of his thoughts and stories.

Summary:

I can’t wait to take Aaron to see the movie this Saturday. As an added bonus, the new Director of the Day Program for Goodwill/Easter Seals is going to go with us. I have to say, this is the first time since Aaron graduated from High School that I am hopeful Aaron will begin to communicate again with facilitated communication (FC).

I am reminded of the quote from the early days of FC:

“Not being able to speak, is not the same as not having anything to say.”

But I’m preparing myself.

Aaron has not used his communication system in over 10 years. Ever since his facilitator moved away and …. long story.

I have been so moved by Larry and Tracy, my faith in Doug Biklen, the W&J trailer, the songs from the Soundtrack and the pre-publication publicity.

Sometimes a movie, a song, a story about hope and a lifetime of endurance is so moving it can take your words away: “Being able to speak, doesn’t mean you will find the right words.” Yep, I’m one of the Jabberers.

Keep Climbing: Onward and Upward

Mary

Parts of this were quoted from the Wretches and Jabberers Newsletter: Volume 8 (April 2011)

Comment:

Please add your voice to this story:

What phrase in the song, The Letter, did you find the most powerful? Will you see the movie, buy the Soundtrack, or otherwise support Autism Awareness month? Can you imagine what not being able to speak with words must be like? Anything else you want to add?

What happens when the roof collapses?

Our House of Cards|Disability Style (Part 2)

Introduction:

I am going to try to describe what is happening to Aaron, my son who is 36 years old and has the labels of autism and developmental disabilities. It is a complicated story. In the comments, let me know if this makes sense.

Click on the Following Articles for Additional Background:

Our House of Cards|Disability Style (Part 1)

Dream Plan Part 4

Attack by Friendly Fire| People with Disabilities and their families

Have you ever rented a house or apartment?

If you answered “yes” you are like the majority of us. It is a typical, normal experience, right?

Normal World

You sign a lease.
You pay your rent on time.
You take good care of the inside of the house, providing the furnishings.
You pick up the sticks and papers in the yard.
You pull weeds, mulch and plant flowers.
You don’t put the garbage out until after 6 PM.
You get along great with your housemate and the neighbors.

Everything’s great, right?

Disability World

In Aaron’s case, he follows all the above, and has lived there for over 9 years.

In addition, since we figured he’d be living there the rest of his life (possibly 60 years) Aaron paid $1000 to build a patio on the back of the house.

Aaron got a HUD rent subsidy so he would only need one other housemate to help pay the rent. With his family, he even showed the owners of the house (a non-profit) how to get HUD approval.

Perfect tenant, right?

But, things are not perfect.

Because of his severe disabilities Aaron and his housemate need 24/7 support staff.

The company that manages the support staff has organizational, financial, and other issues (not unlike most residential companies).

So, though we love and trust Annie, our terrific head staff person, the company can’t ever seem to get additional staff to help–especially on the weekends.

The company continually blames Aaron saying his autism and intellectual disabilities are more difficult than other “clients,” so no staff want to work with him.

So we are stuck.

The county also says all the people who live in a house have to have the same residential provider.

So Aaron, Jack (his housemate/guardians) have to agree before we could change providers.

The county also tells us all the providers have the same issues, so it wouldn’t really make much difference.

So we suck it up, but NOT quietly

With tremendous effort and lots of positive thinking, we keep working to make things better, and fall into an okay routine.

The Plot Thickens

What would you think if one day your landlord calls and says, you have a vacant bedroom in the house and there is a homeless person with severe disabilties who needs a place to live?

Further, the county is short on money and passed a regulation saying all empty bedrooms will be filled.

And oh, since you don’t own the house–tough shit!

Oh, and by the way, the residential company you endure will now be in charge of three people. So if you want to change companies you will need not two–but all three people/guardians to agree before you can change.

They do promise additional quality staff for a couple hours in the morning and evening to help get everyone dressed, bathed, toileted, fed, and groomed. But we have been with this company for over 9 years and know they often make promises they can’t keep.

Again, these are not evil people, they just don’t have the support system THEY need.

Run Run Run

The Perfect Storm

If this was a Stephen King novel, at this point in the story there would have to be some unforseen twists to really make things interesting.

Since, being a person with a severe disability isn’t drama enough, sure enough The Perfect Storm overturns the barely floating status-quo boat.

1. We still have trouble finding adequate staff.
2. Jack, Aaron’s housemate, “falls,” breaks his leg and is now using a walker (with great difficulty).
3. The replacement staff are “trained” by the supervisor over the phone. (Yep, couldn’t make this up.)
4. Aaron’s behaviors are increasing and when switching to new medications, the new staff (trained over the phone) accidently gives an overdose of Zoloft.
5. The county, like all government agencies, is desperate for funds.
6. The visit for the NEW housemate is set up for Tuesday night. Like it or not. (another post)
7. Make up a couple more dramas and they are probably true.

Discussion

Since the county and the residential provider both profess they follow the principles of normalization, inclusion, self-determination and John McGee’s Gentle Teaching…. let’s start there.

Normalization:

A normal person rents a house or apartment:

Unless they violate the terms of the lease, the landlord doesn’t care what you do with the rooms in the house. In fact, they would only care if you brought in an extra person.

A person with a disability rents a house or apartment:

The landlord can demand you put a perfect stranger, with severe disabilities, in one of the rooms.

Even if you say, “These houses aren’t private”– can you imagine going to any other group of people in HUD owned homes, people in the projects, people who are poor, elderly, unemployed, needy and telling them they HAD to add a stranger to their household?

Hey, most people don’t even want to have relatives and people they know move in. Strangers, I don’t think so.

Inclusion:

The house is in a residential neighborhood of single family homes. The houses is small and not zoned for a group home.

Adding one or two more housemates will mean there are twice as many cars, twice the number of staff, twice the number of pick up and deliveries.

One of the reasons the neighbors have been so nice, is they got to know Aaron and Jack. Our efforts to blend into the neighborhood and keep the house looking good has brought a level of acceptance. There is a delicate balance for inclusion in the neighborhood.

Self-Determination:

It seems when there are budget cuts–self-determination and individual choices are scratched off the books.

Aaron

There is no way adding a new housemate is in Aaron’s best interests.

Aaron and Jack have had a terrible time getting quality staff, period.
Few will take them into the community. As Aaron’s behaviors have deteriorated in the last year and he is on more medication, there is less incentive to take him even for walks in the neighborhood, as well as into neighborhood stores…. Aaron is already isolated. Adding a third housemate will make this even more difficult.

Gentle Teaching:

Dang, let’s not even go there.

Summary:

This isn’t all a surprise. In 2009, my husband and I challenged the county board’s authority to do this. Earlier this year, we were alerted this might be happening. See above related posts.

I keep hoping there is some sort of HUD requirement saying the government can’t just bring strangers to live in your house. (There is that constitutional protection against the government forcing people to house soldiers.)

I keep hoping some sort of civil rights, or just human compassion will prevail.

I keep hoping the fact that there have been two MUIs in the house in the last couple months (broken foot and overdose) will give people a clue that the house is in crisis.

I keep hoping the history of lack of adequate staff will also tell people that poorly paid and trained staff taking care of two men who need total care is a difficult job. Adding a third person is ridiculous.

I keep hoping that SOMEONE will notice the company in charge is filling for bankruptcy–duh! Do we really think it is safe to put MORE people in their charge?

Strategy:

We are using every avenue to fight this forced placement.

We are also trying to get the county to think outside the traditional funding box.

For years, we have heard about micro-boards, foster care, private providers, HUD houses, community initiatives, pairing people with disabilities with people who are poor, displaced, out of work….

Where are the creative thinkers who used to work with us? Where are the professionals who are being paid to problem-solve? Where are my friends who I trusted and gave years of volunteer time?

God knows I cry for the poor man who needs a home. If we weren’t in such turmoil, I’d personally offer to help him.

God knows I also hear from my relatives and neighbors that the government is too big and needs to be cut.

God knows I even hear some people tell me, “You created this defective child, it is your responsibility to take care of him.”

Please Comment:

Anyone have any ACES up their sleeves? Any trump or wild cards? Hey, I’ll even consider some creative card tricks *wink wink*.

Thanks to everyone who has sent such kind notes of encouragement. We will survive. Aaron will survive.

But, geez louise… I figured out the Medicaid Waiver, I figured out the HUD rent subsidy and now people all over the area are using those supports. I’m exhausted.

We’ve taken Aaron home with us 15 of the last 30 days because of the turmoil in the house…And that was before the notice this week of the new housemate.  Share your thoughts.

Keep Climbing: Onward and Upward

All my best, Mary