This essay was written in response to McTernan and Ward (2005), who are, respectively, president and immediate past president of the Voice of the Retarded (VOR). As parents of adults with severe developmental disabilities, their advocacy is to maintain a place in society for large institutions for people with severe or profound mental retardation.

Because VOR purports to be an advocate for people with disabilities, such as my son, I have followed their advocacy over the years. Their perspective has not matured with time, rather, it has become overburdened with references to research, state audits, media, and peer-reviewed studies. They are more concerned with what politicians and governmental agencies are doing relative to supporting or tearing down their cause than being honest with themselves.

McTernan and Ward's (2005) use of stiff and technical words, such as empirical indicators, measures, quality, and tenured, are veils that cover a desperate fear, a fear that could be eliminated if they choose to do so.

The VOR lobbies and intimately follows the movement and decisions of every government-directed agency, policymaker, statistician, academic, media outlet, vocal parent, or organization (statewide and nationally) that has anything to say or do on the subject of institutions and people with developmental disabilities. I have known “fear” intimately, and it is ever present in the work and words of VOR.

Hope, Love, and Faith Do Not Live in the Midst of Fear

McTernan and Ward's (2005) paper seems to be a sad reflection of what some parents and families believe they must do to advocate for their children and siblings in an attempt to rally support for a position that is not necessarily the most loving thing to do. If government is driven primarily by money, then there is always a study that can substantiate savings on any side of the community versus institution debate. If laws drive the success of children with disabilities in school, at home, and in their lives, there is always is an interpretation on the letters of the law that are useful in keeping institutions open or not and schools inclusive or not. If academia is the final word as to where people with disabilities should live, a different point of view can always be found. Our family chose hope, love, and faith. Although challenging at times, the return is a million-fold.

My son Ben Boisot is 15 years old and lives at home with his family. He is deaf and blind, has developmental disabilities, and uses a wheelchair. He is quadriplegic; wears contact lenses; has been on the operating table possibly 100 times for medical conditions related to his disability; has a life- threatening seizure disorder; needs to be fed, dressed, bathed, toileted; and given 24-hour care. Ben does not have formal communication skills and cannot transfer himself or bear weight. He requires the assistance of two people to lift his 110 pounds from one place to the other.

By anyone's standards Ben has severe, profound, and multiple disabilities. I dislike having to highlight Ben's disabilities to make a point. I want this to be among the last of those times: His disabilities are secondary to his gifts, and I would rather highlight those instead.

Ben mows through life's inconveniences without self-pity or ill-will toward anyone. He judges people not by their weight, good looks, athletic abilities, or labels on their clothes, but by what his mind's eye can see in their heart. Ben's life example is to be revered and followed, not hidden away or given some token access to what life offers.

In our society, people with disabilities are still referred to as “suffering from the tragedy of birth defects,” “afflicted with autism,” a “victim of blindness,” or “wheelchair bound;” and pitied as a result. The use of these sensationalized words and phrases has crept into our language, reflecting values, perpetuating ignorance, and making people with disabilities feel and believe they are inferior and do not belong.

Ben's disabilities are only a part of who he is, and I am very proud to say he is “my son.” He is not a victim of his blindness—he can see things those of us with eyes cannot. He is not bound to his wheelchair—it gives him freedom. Ben currently lives with his stepfather, Steve, and me; a German shepherd and four cats; in a fifth wheel trailer (we purchased on eBay); and on 5 acres in Northern California while we build our new home. In the summer it is really cookin' here, and in the winter it pours rain, hails golf balls (I hear), and snows. We do not have electricity yet, which means we have no land line; we hope this will be rectified soon. We have a well but no electricity to pump the water from the well. And, when we need an ambulance for Ben, we run up the hill on the ATV and call 911 on the cell phone; there is no cell service where we live. It is an adventure and a risk, not unlike adventures and risks people choose to take everyday.

Where we live, the deer graze in the grass while the rabbits and quail move among them. The squirrels play in the trees and squeal when they see the dog. The spiders are bigger than any we have ever seen, and wild berries, nuts, and fruit grow down by the creek.

Ben is experiencing life and more of what it has to offer. Ben is a son, a brother, a stepson, a friend and neighbor, community member, student, a classmate in regular education at his neighborhood school, health club member, and a spiritual teacher. He swims, goes hiking, rides a bike, and races around on the ATV and snowmobile with Steve. Steve is a pilot, and when we go flying, Ben and I feel like soaring birds. Steve and I are preparing to take Ben hang gliding for the first time soon, and next summer the family is going rock climbing in the 1987 Suzuki Samurai we also purchased on eBay—really cheap.

Ben has created opportunities for principals of schools, administrators of school districts, parents of regular education children, thousands of students in regular education, and dozens of children with special needs to grow and mature. He has expanded their world of tolerance, understanding, love, and an appreciation for one another, their differences, and the gift of life. In turn, they have expanded the lives of others. Ben has accomplished all of this all because he has always lived, learned, and played in their midst. His life is a gift to be shared.

Where would Ben be if I listened to the doctor when he said, “He will only lie in bed, and nothing more.” The doctors' diagnosis was profoundly and severely wrong. How would other lives be different today, if I had listened and Ben had not touched them?

In 2002, when Ben was an 8th grade student graduating from his neighborhood junior high school, I received a vague form letter that Ben was to receive an honor at a school awards ceremony. These honors are typically reserved for students whose academic excellence is extraordinary. Ben's is not.

During the ceremony, Ben sat in his wheelchair in the front row upon the school stage with 30 other kids. He repeatedly signed “Mom” and “Michelle” (his sister) and could not keep himself from laughing. His hands were flailing wildly as if he were yelling out our names. Half-way through the ceremony, he put his finger in his mouth and made his gums bleed and the blood rolled down his face.

I frantically looked at my daughter and said, “Michelle, do something!” Ben's 16- year-old sister ran up on stage and wiped his face with her sleeve and the ceremony never missed a beat. For more than one hour, I prayed, cried, laughed, and beamed. However, as time wore on and Ben's name still was not called, I said to Michelle, “Honey, Ben is going to fall apart on stage! This is going on for way too long!” She grabbed me by the shoulders and said, “Get a grip of yourself, Mom. He is going to be just fine!”

The last award of the evening was presented to Ben by the principal of the school where the student population is nearly 1,000.

The Principal's Award

The Principal's Award recognizes a student who has made a difference to our school during their 2 years at Goleta Valley Junior High. This student caught my attention from the first day. Once in a while, someone crosses your path and, without meaning to, has the most profound effect on your life. This happened to me last year and has continued throughout this year.

I have learned about new things to value in my life in ways I never expected or thought possible. He touches my life and the lives of others and makes a difference every single day at Goleta Valley. Wherever he goes and whatever he does, he changes people's outlook and makes us evaluate our values and beliefs. He reminds you with his smile and his laugh that he loves being here, loves his classes and teachers, and loves learning. He has so much to offer and I for one have taken advantage of this unique opportunity. His persistence and commitment has been inspiring, and we are so lucky that he shares himself with us unconditionally—a most beautiful and precious gift that I know I will always cherish.

There was no doubt in my mind that the Principal Award belongs to him. It is with deep respect and admiration that I give this to him. Please help me recognize BENJAMIN BOISOT.

After the ceremony, a parent approached me and said, “Ben was the best part of what would have otherwise been a very boring ceremony. Thank you.”

Sharing Ben's life and his example is more powerful than 4,000 voices chanting in unison on the Capitol Steps “Don't take my wheelchair away!” because the governor has made a proposal to cut Medicaid, and more effective than a mother's prepared testimony making a teary-eyed plea before a state or federal legislative committee because there are also plans to cut back support for in-home care.

Ben is about what is possible, and this will be remembered long after state audits have been placed in the round file, new data are compiled from new research, and the old data are dismissed or forgotten, and our friends in the legislature are long gone from office.

In my own personal growth, years ago I chose to stare fear directly in the face, and it is not easy. Was Ben really only a crisis away from being unceremoniously disposed of in an institution due to many potential influences: uninformed policymakers, social attitudes, and/or pro-institutionalists? This is what I thought. Would someone, some policy, or opinion better and more loudly voiced than mine, ultimately force me to leave my son where he does not belong? I was desperate with fear.

There is no “hope” in the midst of “fear.” In the search for hope, I have visited several institutions—state-run developmental centers, private Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) and nursing homes, where I found Ben's disabilities far exceeded the disabilities of most people there.

There is no hope in these places.

In February 2002, I interviewed and wrote about Mary, who was living in a Southern California state-run developmental center.

She Can Hardly Wait to Move and She's Afraid to Leave

Recently I visited a 45-year-old woman I will call “Mary,” living in a locked behavior unit in a state-run developmental center where almost 850 people live. I can't begin to understand why such a place exists.

I was allowed to enter after the door was unlocked, and stood for just a moment looking down a narrow and dimly lit hallway where fifteen or twenty people with developmental disabilities were milling around. The lighting seemed yellow.

I'm not sure if the lights were actually yellow, or the light fixtures just hadn't been cleaned in a long time. Whatever the reason, my own spirit darkened immediately. I could feel it.

The walls were gray. Well, at least that is what I remember. They may have been white, Navajo white, blue or green—they just seemed gray, as did the tile floors. I could hear the heals of my boots click as I started to walk down the hall—the sound seemed to echo.

There wasn't a picture or a decoration on the wall—nothing that would reflect a person's image. Did people know they had an image? I didn't see any framed landscapes adorning the hall so one could spend time with their imagination smelling the pine needles, listening to the water flow in a mountain stream, or watch the birds soar in the sky above. Imaginations must get lost in that place.

I know the reason why décor was non-existent, but the explanation doesn't change the scene.

There weren't any windows that would give a person a view of the day. I looked around and wondered if people inside knew how lovely the weather was outside. Earlier that day I saw some gentlemen teeing off at the golf course that surrounds the institution. Do they think about the people inside or even care? Most everyone I saw and met was behaving in an inappropriate manner, and asking inappropriate questions of strangers who entered the hall where they stood. I was asked a few questions too, but don't remember what they were. I remember the faces though. They weren't faces like yours or mine—they were faces lost and searching for something to do, a reason to be. Some of the people were screaming, and pounding on walls and doors, and others watched and learned from their peers.

The philosophy of this institution includes, “People do not lose their inherent value simply because of a disability.” Yes they do.

Mary will be moving out of the behavior unit soon into her own home in supported living. The thought of a home is an exciting and frightening prospect for Mary. She hates it there in the developmental center. I asked her how she felt about leaving and she looked me square in the eyes and said, “Thank God!” Mary tells me her every move is watched there, her every action is monitored, and she has been physically abused by her roommate. There is little privacy—not even on the toilet, and the screaming never ends. “It gets worse around lunchtime,” she said. The agitation grows and festers as the morning hours accumulate— then the restraints come out and more screaming. “It never stops.” Mary will not eat breakfast or lunch anymore because the same thing is served every day.

Yes, every single day. A person on staff confirmed this, and I do not blame Mary for not wanting to eat.

How do we go to bed at night, shut our eyes fall asleep and dream? Money, budgets, and “The Governor doesn't care,” are no longer excuses. We know how to support people better than this and have the capabilities to do so. Mary is also afraid to leave. Living in the community has been a nightmare. She has lived in psychiatric units, friends' houses, cheap motels, group homes, independent living situations, hooked up with the wrong kind of men, wandered the streets homeless, and her family doesn't want her because she won't do what they tell her. Mary has failed miserably. This is what she thinks.

Mary is preparing to move into a first floor walk-in apartment in an area she knows, with a roommate she likes. Her furniture, and kitchen counters will have rounded corners, and every room will be carpeted, in case she falls during a seizure. Mary will have 24-hour supports from supported-living professionals, and a psychiatrist will work with her to help her regain the self-esteem that disappeared decades ago. A dentist will give Mary new teeth—she doesn't have any.

A job awaits her arrival, and she will go to the grocery store to buy the food she likes—when she wants. “I'm a good cook.”

She can hardly wait to move, she's afraid to leave, and worries abut making poor choices again.

I asked Mary what she would do if a person supporting her in her new home became concerned about some of the life choices she was making. She said, “I will have a talk with myself, and ask if this is really a good idea.”

Mary, good luck in your new life. You have been so patient, and I don't understand why.

Mary's family advocated for her continued stay there. I read the letter her mother wrote.

I don't understand.

In July of 2002, I visited Mary in her new home. SHE NOW HAS A WINDOW WITH A VIEW.

It was June before I saw Mary again. It turns out her scheduled move from the developmental center was delayed after another resident scratched her so badly because staff wasn't around to protect her. She spent about two weeks in the infirmary. Mary was in a deep and dark depression when she finally left the institution. Recovering, she has been living in her own home now for three months. “Thank God!”

Mary now lives in the wine country California is known for. Her apartment is located just beneath the golden rolling hills scattered with oak trees, lined with vineyards and country roads. When I drove up, Mary and Laura (her supported living staff) were pulling into the parking lot, returning from errands downtown. I couldn't believe my eyes.

I don't remember what Mary was wearing when I saw her in February. Sweat clothes maybe. I do remember that the condition and color of her clothes matched the surroundings—dark and depressed. The helmet she was forced to wear to protect her head from the violence of her seizures looked unattractive, scratched up by any number of previous wearers and very old. Her hair was straight, dull and plastered to her head by the helmet.

This time everything was different. Everything.

Mary was wearing a new light blue, flowered t-shirt, matching shorts and cute white sandals. It was 90 degrees outside. One of the first things she told me was that she likes her new sandals so much she had ordered more just like them. She kept looking at her feet.

Mary still walked slowly, and she slumped a bit. It took us a while to get to her front door from the parking lot although it wasn't far away. The depression still hangs on because she has lived with it for so long. It was not treated in the developmental center. The new doctor said it would take some time.

With her own key to the small apartment Mary let me in, not staff. The first thing I noticed was how her new surroundings lifted my spirit because I still remember clearly what it was like for her before. There were houseplants in the corners, a TV and colorful art on the walls, including a tiger rug hand hooked by her roommate. I glanced over to the couch and saw two kittens cuddled up together and asked what the kittens' names were.

“The calico cat is Laura. I have six plants named Laura too.”

Mary and Laura have become good friends and Mary has reminders of that friendship everywhere. “She loves me most of the time,” said Laura. There wasn't anyone for Mary to love in the developmental center.

I took a good look at Mary and noticed her hair. She had changed it. “The lady next door is a beauty operator and she gave me a permanent and dyed my hair. It turned out too red, I feel like I'm an apple.” As she fussed with her hair she added, “I want it really blonde.” So it will.

I stood in the middle of the living room and took a good look around. The view from the living room and kitchen windows are beautiful. The oak trees on the hills only yards away looked inviting—it was so hot.

Everything about the inside was home. The lazy-boy chairs and the couch where the kittens slept were soft, and the six “Laura” plants sat on the round kitchen table covered with a padded flowered tablecloth. The apartment was carpeted and there were throw rugs in the kitchen and bathroom. Mary mentioned she was tired of tripping over the throw rugs and wanted them to go. So they will.

Most people wouldn't know the soft and rounded interior was designed to keep Mary safe during one of the violent seizures that eventually knocked out her teeth over the years. But she doesn't have seizures much anymore. The new doctor is seeing to that.

I asked to use the bathroom and as I was washing my hands I noticed the hairspray, the fruit and flower scented body sprays—the feminine things women like to have. How about that.

I took a few photos of Mary and when she smiles from ear to ear, the question becomes obvious. “Mary, when are you going to get some new teeth?” She has none that I could see. In the developmental center the staff tried to puree her food and she hated being “treated like a baby.”

“I have an appointment,” she said.

I sat at the kitchen table with Mary as she wrote a check from her personal bank account for money she owed Laura I think. Imprinted on the upper left hand corner of her checks was “Praise the Lord.” After she asked me how to spell, “twenty”, we chatted for a while and talked about her upcoming trip to the Alpaca farm and about the medication her psychiatrist prescribed for her depression. Mary would rather talk about her problems than take pills and that is part of the plan.

Welcome home, Mary.

“Hope” is in the life Ben leads and in what Mary has found for herself. My “hope” is in all the people who touch Ben's life because I have seen time and again how deeply he has touched theirs.

I Will Remember

On Friday, June 15th, 2001, my son, Ben, graduates with his sixth grade class from Brandon Elementary School in Goleta, California. For my family, this will be a day remembered long after most memories fade.

The sixth grade students will stand proudly on stage, each looking out in the audience searching for their parents, and when the eyes of parents and child finally meet, big smiles will appear on everyone's faces and hands will wave.

Parents will look to whoever stands next to them and say, “That's my Johnny,” or “Doesn't my Melinda look so beautiful,” and “Which child is yours?”

Ben won't be looking for me; he will just know we are there. We won't wave, because he wouldn't be able to see if we did. But he will know the pride we carry in our hearts and in our souls—he will feel it.

Maybe, I'll wave anyway.

As other parents yell out children's names trying to catch their attention for the photo opportunity that will grace the pages of the family album for decades to come, Ben's father and I won't yell out. Ben wouldn't hear it if we did.

But, that's okay. A camera cannot capture what Ben's fellow classmates feel about him as a valued friend and neighbor.

Maybe, I'll yell out his name anyway.

I will almost certainly be sitting with dozens of other proud parents, tears collecting in their eyes, as they reflect upon all the years that preceded this momentous day and what it took to get there.

It was probably a hard road traveled.

Some parents will be fantasizing of the rewards they shall reap from the commitment to their children's education, imagining a future with a Nobel Prize winning scientist, a famous surgeon, or a high-powered lawyer in the family. Others will be thinking about the symbolism of the ceremony—their child's biggest step so far toward independence, self-sufficiency, and adulthood.

After all, that is what parents are supposed to prepare their children to achieve.

My thoughts will be elsewhere.

It wasn't long ago that Ben's participation in the regular classroom of his neighborhood school was not possible.

Thirty years ago Ben would not have had a chance to know about school because a public education was not available. Ten years ago Ben's only choice would have been a classroom for the “severely handicapped,” far away from his neighborhood in a room at the back of a school campus, where his peers would never have known he existed.

Ben's graduation on Friday will be symbolic of tremendous change in how people with disabilities are perceived and Ben has made contributions toward this change that will likely never be rewarded, touted, or even acknowledged the way academic excellence is.

But Ben doesn't care and neither do I. Not much anyway.

Ben's reward is that his life has helped shape the future for other children with and without disabilities and someday all children will become a natural part of the human experience.

I plan on living to see this day.

As we watch our children in the graduation procession, I will remember the years that have passed since Ben's first day of kindergarten when he lined up with his new classmates to enter their classroom for the first time. The teacher said to each child, including Ben, “Welcome, I am so glad you are in my class.”

I will remember when a parent ran up to me on the first day of fourth grade and said all her daughter could say to her was, “I finally get to be in Ben's class.”

I will remember the day the principal said to me, “Terry, I have been getting letters from parents requesting their children be in the same class as Ben. What am I going to do? I can't possibly accommodate all the requests.”

I will remember all the kids that wanted to be Ben's roommate on their adventure to Astro Camp last year, and seeing Ernesto hold Ben's hand as the class watched a movie in a Hollywood theatre last week.

I will remember when Isaac accidentally broke Ben's hearing aide case, and he asked his grandfather to drive him downtown to buy a new one. Isaac waited in the school parking lot the next morning and when Ben and I arrived, Isaac ran up to the car, new case in hand, and said, “I know how important this is to you, Ben.”

I will remember the look on the on the faces of his classmates and friends, when he pushes the lever on his new wheelchair and slowly rises up to stand tall next to the friends he has learned to love and appreciate so much.

I will remember.

Four months ago, our family moved from a small house with a big mortgage in Santa Barbara, California, to where we live now. Santa Barbara is where I grew up, the only place I have ever lived. It is also the only place my children have called “home,” and there Ben had tremendous success being included in everyday life.

We left it all behind and with “hope” in one pocket, and “faith” in the other.

The Far Northern Regional Center, one of 21 regional centers in California that provide support and services to people with developmental disabilities, welcomed us into their community and offered us the support Ben needed to live a self-determined life.

I put an ad in the local paper for an assistant to a 14-year-old boy in a wheelchair. I received many calls and e-mails in response. One of the two people I hired is Sam.

Sam, who is 19 years old, attends the local City College. His plans are to become a CPA. He knew almost nothing about disabilities, but the hours fit his schedule. About a week after I hired Sam he asked me an important question.

How many people applied for this job?

About 50.

How come I got hired?

Because you have almost no experience. I didn't call back most of the people who said they did.”

Sam looked puzzled but didn't say anything more.

Later that day I asked Sam if he was seriously looking for a girlfriend (he had mentioned that to me earlier).

Well, yeah,” Sam said.

“Did you know that being out in public with Ben you automatically become a chick magnet?”

“Really?” he asked.

Absolutely. Walk proud with him and your life will change.

Within a month Sam had a girlfriend.

In the beginning Sam did not feel comfortable changing Ben's diapers or giving him a bath. So, Steve and I cared for Ben in these ways and Sam watched. As Sam has grown to love and appreciate Ben, giving him a bath, feeding him, and changing his diapers is becoming more natural everyday. Sam calls him “Buddy,” and brings him to his little house in the city to hang out with his roommates and listen to music. They go to Sam's mom's house on the weekends, and they go out to lunch. They go jet skiing, to the water park, on wilder rides than I care to know about on the ATV, and have plans for a double date. Sam also follows the protocol when Ben has a seizure and stays calm, loving, and reassuring. Sam has a new friend and so does Ben.

Everyday, the training Ben receives is in how to be a part of the natural course of life, contribute to his world, and enjoy what it has to offer.

I have hope that more parents and families find what we have.

My hand is extended. I wait to feel the touch of another.

NOTE: Permission to reprint: “She Can Hardly Wait to Move and She's Afraid to Leave” was granted by TheArcLink, Incorporated, at www.TheArcLink.org). Permission to reprint She Now Has a Window with a View” was granted by TheArcLink, Incorporated, at www.TheArcLink.org, Permission to reprint “I Will Remember” was granted by TheArcLink, Incorporated, at www.TheLink.org.

Reference

Reference
McTernan
,
M.
and
N.
Ward
.
2005
.
Outcomes that matter: A parents' perspective.
Mental Retardation, 43, 214–220
.

Author notes

Author: Terry Kozloff, P O Box 2792, Paradise, CA 95967. terrykozloff@yahoo.com. Ben Boisot can be visited anytime at www.mylifeisagift.com