A Life That Mattered

Guest Commentary
by Marty Omoto, director/organizer of the California Disability Community Action Network (CDCAN)
 
Marty will be speaking at the next PHA General Membership Meeting scheduled for 10 a.m., Saturday, May 12, 2012, in McDougall Hall on the Sonoma Developmental Center campus.
This commentary was originally written in 2007 and is reposted here with the kind permission of the author.

I remember an enchanting photo of a young 4 year old boy, on a swing pushed gently by his unseen father, the boy's face lit on one side by bright sunlight, his eyes squinting in an almost teasing way, legs dangling playfully, his head tilted trying to catch the attention of his mother taking the picture, with a magical smile captured on a golden day long past.

Under the photo were the stark words "the darkness never overcame him".

It seemed unbelievable that those words and that photo - so full of life and joy - had anything to do with each other. And yet it seemed appropriate on the boy's memorial card, celebrating his short life and marking his unexpected death 19 years later.


"The darkness never overcame him..."

A year ago on September 7, 2006, Aaron Dimmitt, son of Michael and Barbara passed away just weeks before his 23rd birthday. They were with him, along with his sister, when he died in the hospital - his parents holding and hugging him as his life slipped away.

He had down syndrome and many other developmental and physical disabilities, including disabilities that may have been linked to autism.

He was most of all a beloved son to his parents and brother.

While darkness never overcame him in his short life, it sometimes seemed darkness overwhelmed the family he left behind. For his father - at the time, the Assembly Budget Committee consultant on Medi-Cal, health and developmental services - and his mother and sister, it was getting through the darkness of unexpected loss and unimaginable sadness.

It is a feeling that links them to so many of us who have experienced the same feelings of loss. It also links them to so many others who have experienced feelings of despair and anguish that comes when people are faced with one barrier, one struggle or one fight too many.

This is the other side of public policymaking and advocacy where people are often alone and unconnected, feeling helpless and without hope. It is the other side - I referred to as "the other California" before, that matters as much as any press conference, or debate on the budget, or hearing on some bill or drafting some regulation or writing a letter to a legislator, or analyzing an issue or putting out a report.



In Memory Of A Young Boy's Life and So Many Others

So this commentary is in memory of a young boy's young life and remembering that he lived. This is also about remembering others who have lost friends and family - Noel Neudeck, who died in March 2007, Jim Sanford who died in January this year, Jeanette Nishikawa who passed away this summer, Mary Ann Jones in September, Jane Jackson and Bob Roberts in October, Shirley Klein. who died in May 2007. Warren Mattingly who died in May 2006, Natasha Littletree who passed away October 2004. And so many others - some well known, some not - but all needed and loved by someone.

And advocates who have lost loved ones over the years and recently - including the loss of husbands for Julie Barnes and Sue Swezy, the death of beloved grandson of Shirley Dove, the son of Peter Vang, the brothers of Theresa DeBell and Maureen Fitzgerald, Dennis and Susan Dishaw son, the daughter of Linda Landry and her husband, and so many others who somehow continue through the sadness of loss.

This is also meant to reach out to so many people, whether persons with disabilities or persons with mental health needs, children with autism or seniors with Alzheimer's or people with MS and their families, for support workers and providers and advocates - who face their own unimaginable losses and battles, barriers and struggles, that can seem unending - that other side of policy making and advocacy.

In the end it is always about coping, hoping and surviving until the next day. I write about this often because it happens so much and for me, it will always be something that is with me.

The Other Side of Public Policy Making and Advocacy

I thought about that picture at the public hearing of the Commission on Autism held last week [September 16, 2007] at the State Capitol and there was good work being done. There was a long line of parents and families, even a UC Davis undergraduate with autism, and those on dais too, who gave moving, touching and often emotional pleas for help and the awful consequences of further delay, more talk, more promises and years and years of no action and indifference.

I sat at the hearing, listening, with Aaron's picture in my mind, and also thinking how much I have heard the same tone of anguish - mixed with passion not to give up, at so many other meetings of advocates covering this and other issues: in-home supportive services, developmental centers, access, special education, employment and more.

It is like some unending play on some theater stage: some of us warning of danger, some of us being warned for causing it, but all of us vulnerable to the consequences of terrible indifference and inaction. But on the other side of public policy making and advocacy, some are more vulnerable than others.

One fights passionately to desperately stop something bad from happening, with the awful gnawing feeling of helplessly sliding down a slippery slope where at the bottom is only oblivion.

Despair at that moment for any of us is terrible evil to fight alone. You could feel it there in that hearing room this week, and at other hearing rooms and meetings before that on other issues impacting our community, no matter what one's philosophy is on inclusion. Fear and sadness can include everyone. The fears expressed by parents of children in developmental centers sounds almost the same as the fears expressed by any other parent of any child with special needs.

I remembered that and thought about Aaron's parents and that picture of their son with the magical smile in the bright sunlight.

Sometimes it seems the sunlight is gone.

For Ann Snowhook it seemed so. She is a devoted and respected longtime advocate for disability rights and friend, and she testified to the Autism Commission about the loss of her daughter Elaine, who died in July 2006. She had developmental disabilities, including cerebral palsy and autism and then she told the commission of the loss of another daughter earlier this year. Her voice broke and she sobbed, "Parents aren't supposed to outlive their children..." The room became terribly silent like it always does when there is no answer.

For Ann - like many of us, in our work of advocacy, for those who lost friends or family, especially those with mental health needs, disabilities, - there are always so many reminders of who we lost. You see pictures of people at hearings or rallies who make you think of someone gone, or hear stories, or hear the anguish in the lives of others that remind one of there own struggles. It is hard sometimes to continue on.

You see injustices and wrongs and suffer the constant amazement of how justice can be so silent.
On the other side of policy making and advocacy, it is dealing with fighting off despair, comforting those who are being harmed, or overcoming yet another act of discrimination. It is easy to give in when the world is cruel and unfair.

But people continue on. Somehow.

One can dedicate one's advocacy in the memory of those gone, and in tribute of those who have come before and to the dreams of people who fight with the belief that things can be better.

We can say "I will fight for access" to continue the work of Noel Neuduck or Jim Sanford, or write words of poetry about advocacy and life as Shirley Klein did or organize and speak out as Warren Mattingly did for inclusion, or stand and speak out for fairness and rights as Natasha Littletree did, or stand for disability and human rights as Justin Dart did. One can stand for the right to live in the community as Bob Roberts and Mary Ann Jones did. One can work to give strength back to the families and people who need it - and let them know that their fight is also ours.

But it is not easy.

You only had to hear Ann Snowhook's broken and sobbing voice to realize that.

Sometimes another person's loss or another person's fight can inspire us to do more. The reasons may be different: some will do it because they fear something that has not yet happened to their own loved ones. Some will do it because they don't want something bad to happen to someone else - even if it already happened to them. And some will do it because it is the right thing to do.

But for others it can be one loss too many, one battle too much, one fight that has gone on too long.
Sadness and weariness - and even resignation can easily overtake the most optimistic person.
I remember hearing that over and over by people with disabilities, mental health needs, families, and most recently the families of children with autism. It is a feeling I understand and share.

As I sat in the that autism commission hearing, and heard the parents and families speak, I remembered the tunnel of grief in the weeks following Aaron Dimmitt's death and how people must cope - grabbing on to hope - to get through it. Most people do. Some people don't. But knowing that people can get through it can help others if we talk about it - in dealing with losses, dealing with barriers and dealing with anguish. No one is alone.

Flash Backwards: October 30, 2006

It was the day before Halloween, on what would have been Aaron's 23rd birthday, at the group home where he had lived just weeks before. His parents still wanted to celebrate his birthday with his friends there, who included the workers there too. It seemed as if everything was normal again - except the stabbing memory that Aaron was gone.

His bedroom there was now bare of his belongings - packed away in boxes and bags to be taken back to his father's house.

It is always unsettling to realize how easy the pieces of someone's life can be simply packed in bags and boxes, like some finished jigsaw puzzle broken back up and swept away off a table.

In the living room Aaron's roommates and support staff - who had become his second family, were eating cake and the lunch - singing to karaoke songs and dancing. They loved to sing and dance. They were remembering Aaron.

In the kitchen Aaron's parents and I sat or stood, talking it seemed only about the present. I remember thinking that this is always how it is after someone dies - the unreality of reality with people getting on with living. Believing and not believing what had happened.

Sitting at the kitchen table, with Aaron's mother, his father standing next to us, holding a plate, my thoughts were distracted by concentrating on what pieces of food I was eating. At that moment I was becoming almost obsessed about finding out the origins of some of the food products before I would eat it, not even sure what species of animal was on my plate. The bright primary red and orange colors on the meats were almost hypnotic - and scary. We were joking abut that and talking quietly in the kind of conversation that dances around reality as if we were all in a play.

And yet reality will always intrude.

Suddenly no one was talking.

I looked to my right and Aaron's mom fork was in her hand mid-way from her plate, frozen - a face now so distant, eyes staring in a place in the past. I looked at Aaron's dad standing next to us, and his eyes too were in some distant place, his face fixed in sadness.

I heard the strains of music coming from the next room and then realized the song they were hearing and what it meant.

All my bags are packed
I'm ready to go
I'm standing here
Outside your door
Hate to wake you up and say goodbye
So kiss me and smile for me
Tell me that you'll wait for me
Hold me like you've never let me go....
I'm leaving on a jet plane
Don't know if I'll be back again
Oh baby - I hate to go

It was John Denver's version of his own song "Leaving on A Jet Plane" sung slow, wistful, and linked to sadness because of his own death in a plane crash off Monterey Bay years ago.

For the moment in that kitchen, it was as if it was Aaron' farewell to his parents.

Hearing the song, the picture of Aaron on the swing on that golden day with his magical smile came to mind. There was so much happiness in their lives together.

But in his last year one remembers what a part of his life had been like. For his family, it was taking Aaron to the hospital so often, that it seemed that the ER was a second home.

It is amazing how life can settle into a routine no matter how awful the circumstances. Somehow the hospital didn't seem to understand what was happening, didn't understand Aaron's disabilities or situation. You get tired of fighting and willingly adapt to any routine, because it means some form of stability.

A crisis for that day. A crisis another day. A crisis after that. You go, you wait, and then eventually go back home together. Then it happens again. Over and over settling into the routine, but with a helpless sinking feeling of slipping further down some awful slope and maybe wondering: would the darkness overcome him?

And then one day - something different happens. One more trip to the ER - one more time waiting. But then the routine is broken. You are told he would not be going home ever again. And then he dies while you hold and hug him.

Now the time has come to leave you
One more time, oh, let me kiss you
And close your eyes and I'll be on my way

Dream about the days to come
When I won't have to leave alone
About the times that I won't have to say ...

Oh, kiss me and smile for me
Tell me that you'll wait for me
Hold me like you'll never let me go

Hearing the words of that song, Aaron's parents seemed to be almost as if they were back in the hospital room, with their son. They were going through that tunnel. I know that look and I understood the feeling.

And then the song ended. The moment passed. Life goes on.

As if nothing had happened, as if a film projector started up again, we resumed talking about other things.

An hour or two later we carried the boxes and bags out of Aaron's place to take to his dad's house not far away. His mom and dad would go through some of it before she went back to her home in Reno. I came with them to help.

It was getting late, and coffee was made, but conversation was light, dancing around the reality that Aaron was gone.

We carried and then dragged the big boxes and bags into the house in the hallway. Aaron's mom wanted to open one box before leaving.

She knelt on the floor, going through some of Aaron's clothes in one of the boxes. His dad and I were standing next to the box, as I handed him items. Conversation was getting harder to keep light.
Aaron's mom still kneeling said ever so softly "oh.....Aaron's favorite jacket" almost in a whisper to herself. She wasn't expecting to see that jacket so soon.

We stopped and both looked at her, seeing her slowly hug the jacket - as if she was embracing Aaron, hunching over almost until her head was nearly in her own lap, feeling for the moment the full and fresh agony of losing her only son.

We froze, there was no sound, I glanced at Aaron's dad at the corner of my eye, his face a mask of fresh sadness and tears too.

After a few long moments, still holding onto Aaron's jacket, she tenderly and slowly folded it, and then gently put it back in the box. It was too much to deal with at the moment. Another day for that.
We were back in the real world - the world that now seemed so unreal. The one without their son.
We talked about other things.
And I could hear the song again in my head - looking at those boxes, the clothes - and the faces of people left behind, and then remembered the picture of the little boy and the song played at his home earlier
Seeing two parents struggling to hold onto memories of their son, like so many others who struggle to hold onto what they had and what they lost.

Flash Forward: September 2007

It has been a year now since Aaron died and his parents marked that day with an event that Aaron would have loved. They bought hamburgers and fries at Aaron's all time favorite place - Bert's Diner located at what seemed to be the edge of Sacramento. He used to go there with his dad, mom and sister for 15 or more years - ever since they first opened. The servers and everyone there were always so kind to them and loved Aaron especially. He could do anything there just about - and it was okay.
Aaron's parent decided, because of the distance, to bring the food from Bert's - the place he loved - for everyone at his group home - including the staff. It was, like his birthday celebration weeks after his passing, a way to remember his life.

The next day I sat on the same stool that Aaron would have used at the counter of the diner, with Aaron's dad, served by the waitress who had, a year before, spoke so movingly at his memorial service. Like then a year before, he was remembered here too.

A week and a half later, at the Commission on Autism hearing I sat and while listening, thought of Aaron, of his parents and my own family's experiences. I heard Ann Snowhook's almost wail of grief, and remembered the many other people who have gone through and overcome loss, or overcome some other terrible time or tragedy or barrier.

Listening I couldn't help but think how much time passes and how much it feels sometimes as if nothing changes, except we lose people we love or care about. I listened to the pleas and anguish mixed with the hopes of the families and parents - many who are friends, and who spoke at that hearing.

I remembered all the voices at so many other hearings, rallies and meetings by so many other people with disabilities and families and advocates.

And yet life goes on.

For Aaron's parents and others who experience loss, how does it? And for those experiencing barriers and resistance, how can it?

Like so many others dealing with loss there is the incredible confusion of how to deal with it - how to remember a person or how to deal with despair that comes with it, and how to move on without giving up those memories.

For people who have died, there are some people who resent others who bring up the memories of a loved one. It can cause discomfort. It might seem maudlin or a grab at pity or sympathy . But anyone who has experienced such tragedy or losses can tell you that none of that matters.

A refrain went through my mind as I sat at the autism commission hearing this past week. I remembered Elizabeth Edward's book "Saving Graces" and the passage that describes her coming to terms in talking about her son's death at age 16. Wade was killed in a single car accident that devastated his family. Years later, somehow both John and Elizabeth Edwards coped with how to remember and talk about their son. She wrote that it was important that others know that he had lived. That his life mattered. Moving on meant that his life was included too.

And that's the bottom line. That is how this connects to our work of advocacy whether facing a loss or facing a barrier and overcoming both.

This is how it relates to our work of advocacy which always must be more than just talking about programs, or services, or rates, or fraud, or eligibility or training. The other side of public policy making and advocacy may seem sometimes to be more about disappointment, barriers, loss and defeat. The other side of public policy making can often be a place where people of color are left out or ignored and in that, having something more in common with so many families and people who are shut out, left out and left behind.

But it is and can always be more than that. It is that a life always matters.

We can be the example for others to connect to, in trying to overcome their own losses or overcome their struggles and to break through barriers.

No one fights alone if we remember that we are not alone in our fight. That is the other side of public policy making and advocacy.

We can remember the people in our lives that have mattered - we can remember Aaron Dimmitt, we can remember Shirley Klein, Jim Sanford, Noel Neuduck, Mary Ann Jones, Jeannette Nishikawa, Bob Roberts, Jane Jackson, Warren Mattingly, Natasha Littletree and so many others who we cherished and loved.

We can remember Ann Snowhook's daughters, Linda Joy Landry's daughter Eveline, Shirley Dove's grandson, Dennis and Susan Dishaw's son, the husbands of Julie Barnes and Sue Swezy, Steve's IHSS worker Doug, Teresa DeBell's brother, and so many others. We can remember that their lives mattered. We can remember the children with special needs, people with disabilities, people with mental health needs, seniors, our families and workers. People with traumatic brain and other injuries, MS and other health needs. Their lives were and are also about victory, joy, and endless dreams and possibilities. All of our lives can be. Their lives matter.

I remember now that enchanting picture of a young boy on a swing bathed in sunlight on some golden day in the in the distant past.

I know now I will never forget it. His magical smile will forever be looking at his mom in that picture.

His life mattered.

For that, in our own lives, we can all hope again. And that means we do more than just survive.

---

Marty Omoto is the director/organizer of the California Disability Community Action Network (CDCAN). He is the brother of Alana who had developmental and physical disabilities. She passed away in 2003, followed by the death of his only remaining younger sister Sheri in 2005, and he will miss them for the rest of his life.

Marty will be speaking at the next PHA General Membership Meeting scheduled for 10 a.m., Saturday, May 12, 2012, in McDougall Hall on the Sonoma Developmental Center campus.

Visit the CDCAN website for free non-partisan CDCAN Disability News Reports and to view archived copies. Since 2000, CDCAN reports and commentaries go out to over 45,000 people with disabilities, seniors, families, Asian and Pacific Islanders disability groups, other minority advocacy groups, organizations, policymakers, media and others across California.