In The Spotlight

Defending Disability Rights in California: Spotlight on Marty Omoto of CDCAN

"We are one community – and we all depend on one another."

PWDF recently contacted Marty Omoto, Director of California Disability Community Action Network (CDCAN), to provide a better understanding of current events in the disability rights movement in California, his organization, and what inspired and continues to inspire him in his work toward equality for all people.

What first brought you into the disability rights movement?

MARTY: Mostly my older sister. She passed away a few years ago, and she had developmental, psychiatric and physical disabilities. I miss her terribly. We were close in age and went to school together, though she was in special education. We were raised in our family in a way where everyone was treated the same – which is remarkable when you look back in those days in the 1960’s when there was little guidance and information. I had five brothers and two sisters.

When I first went to junior high school with her – she was a grade ahead of me – I looked up to her, and looked to her for guidance.... I was scared about going to junior high school, but she calmed me down. That very first week I learned how to get around the school because of her – but I also learned how the outside world treated her. And I learned something about myself too.

They laughed at her and others who were segregated into one room that was referred to as the “MR” classroom. They teased her and the others, calling them names.

At the bus stop, in the hallways. In the cafeteria and on the playground. And no one stopped them.

On that first week going to junior high, I remember feeling small when that happened at our bus stop, and I remember getting on the bus after her. She saved me a seat and looked up at me, as people teased her – she was trying to ignore them. But I was scared - paused slightly glancing at her and then walked past her and the empty seat quickly, as if I didn’t know her. I remember the look on her face. I sat in the back and felt more ashamed of what I did then what they were doing to her. I vowed that I would never do that again. But it was hard for a kid to deal with when you were raised to believe that no one should be treated that way.

Later that same day, I was outside for physical education class with my classmates. I suddenly noticed that everyone was laughing, and I turned to see what they were laughing at. And down the hallway, looking miserable, looking humiliated, was my sister. Dragging a dirty mop, carrying a bucket of dirty water, rags and sponges. She was cleaning the toilets in the restrooms. I remember the look in her eyes, and I think she hoped I would not see her in this way, but I did. I saw her eyes. And she saw mine.

And I couldn’t shut out the laughter around me. I knew she couldn’t either. The school called it “vocational education”, though only the kids in that special education room were required to do it.

My advocacy started on that day. I complained to the principal, to the teachers. I started physically hitting people - even kids much older and bigger than me – if they insulted my sister or anyone else in her class. No one ever hit me back – I think they were startled that some little kid would be fighting – and I think they realized even if only temporarily, that they were doing something shameful and wrong.

During that same time period – actually a few years earlier, my grandparents would clean people’s homes – including rich white people’s homes. My grandmother was one of the early in home supportive services workers back in the early 1960’s – though they didn’t call them that back then. But I saw how she – and my other grandparents (and myself when I was with them helping) were treated. As invisible. As not equal. I saw how people treated my grandparents as if they were children or non-entities. And I saw the look on their faces – and the look in their eyes hoping I wouldn’t see the humiliation they were enduring.

And so my advocacy never stopped since then. No one was ever going to make me be indifferent again. And I would never allow anyone ever again to define me or my sister or my family ever again. Ever.

How long have you been working in the disability rights movement, and how long in your current position at CDCAN?

MARTY: From that point forward – because as I mentioned, I never knew until going to junior high school with my older sister (we went to different elementary schools) that the outside world treated her and others so differently. It was at that time too I began encountering racial discrimination too on a more regular basis – and seeing how others stood by and let that happen, too.

I founded CDCAN back in early 2003 because I began to see the need to connect people and communities together regardless of disability, mental health need or age – and to include families, workers and community organizations too. We are one community, and we all depend on one another. In that time though, it has been difficult on a personal level, as well as organizing during difficult budget times. I lost my older sister then – and less than 2 years later, I lost my only other sister. I know about despair and overcoming some pretty hard times. I didn’t think then I would make it. But then I saw how desperate the situation was for other people, too. And so, it gave me a reason to continue. And I am reminded of it every time I speak to a group or hear from thousands of people who need help or are scared or worried about losing a needed service or even their homes and families. And I remember my sister, and how I learned not to be indifferent.

Please briefly explain the work that CDCAN does, and why it is of such importance.

MARTY: CDCAN is a network that seeks to link together – across California (though really anywhere) people with disabilities, mental health needs, seniors, families, community organizations and workers who provide supports, services and advocacy. I founded it on the simple belief that we are one community and if so, then our advocacy cannot have borders that artificially divide us. We allow ourselves to be divided by state-defined eligibility for services that separates people due to medical or mental health diagnosis as if those are the things that define us as a community.

As the Director of CDCAN, what do you feel is the greatest threat to the well-being and progress of people with disabilities in California today?

MARTY: The greatest threat is indifference. The opposite of love, as Elie Wiesel once wrote, is not hate, but indifference. I have seen the destructive power of indifference – when people stand or sit by and allow injustice to go unanswered, or to allow someone to be harmed. That is true within our own community, too. Less than 60 years ago America stood and sat by while 110,000 Americans were forced out of their homes and interned in camps due to their race. That was my family, my parents. It was the greatest single movement of people into forced institutionalization in modern American history. And the world stood by. And it was done by executive order by a president who used a wheelchair. How ironic.

How do you feel about the way that the disability community is portrayed in the media, and how do you feel the average American defines disability?

MARTY: Using the conventional definition of media (newspapers, magazines, radio, television), I don’t think the disability community is portrayed enough, and when it is, not with the diversity that reflects our entire community. That is a problem not only in the media, but in many statewide disability advocacy groups too. I notice a lack of diversity of color (in statewide advocacy groups) that is as startling and wrong as stereotypes of the disability community in the media.

But if one defines – accurately I think – the media to include the internet...then I think one will find both good and bad portrayals of the disability and mental health communities. In terms of how the average American defines disability, well I think it would depend on their point of reference. Most Americans probably don’t have direct contact with a person with disabilities or mental health needs – or if they do, don’t realize it. But I think it is slowly changing as more and more people are living and working in their own communities.

Still I think most Americans confuse defining certain developmental disabilities, such as some autism spectrum disorders, with persons who may have a mental health need. But that is changing too as our community becomes more visible. But what is really important is how we define ourselves. And that really is simply this: each of us is a life that matters.

Since you began your work at CDCAN, what has been the biggest change in the disability rights movement? Biggest victories, biggest obstacles, etc?

MARTY: I think technology has brought change to our movement because it has offered so many different and compelling ways to communicate and sometimes reach vast audiences that were not possible 10 or 15 years ago. Connecting previously isolated people to communities is a big victory – but no victory lasts unless we continue to fight to keep it.

Here at People with Disabilities Foundation, our main focus is on people with psychiatric, or “invisible” disabilities. How effective do you feel the “system” is in serving people with psychiatric disabilities and helping them attain equal opportunity and full participation in society, as compared to how well it serves people with physical disabilities or developmental disabilities?

MARTY: There is a Chinese proverb that a journey of a thousand miles begins with a single step. So I think California – and this country has at least made that first step – maybe several more, but there is a long, long, long way to go. I think there is a difference on how the larger population deals with people with physical disabilities who otherwise appear to look like them, as opposed to people with significant physical or developmental disabilities, including traumatic brain and other injuries. And I think likewise, people with hidden or invisible disabilities – people with mental health or psychiatric disabilities, face different challenges too – because the larger population will often make judgments without knowing their disabilities – because it is invisible. That judgment can lead to discrimination, humiliation and exclusion.

What do you feel is the biggest threat to the rights of the disability community? And in what manner?

MARTY: As I mentioned before, the biggest threat is indifference – indifference by the larger world we live in when bad things happen to our community, and indifference within our own community because we stand by or sit by and allow bad things to happen to other people simply because they receive different services or supports or have a different government-defined eligibility that puts people in different boxes.

What do you feel is the most glaring example of allowable discrimination against people with disabilities today?

MARTY: Even “allowable” discrimination – discrimination that happens because government somehow sanctions it as okay – is still as wrong as discrimination that is considered illegal. One example is eligibility standards and the assessments done that often shut out children and adults with disabilities, with mental health needs, and those who are elderly, from getting the services and supports they need and have a right to. That happens in special education, it happens in determining what hours are needed for in-home supports, (and) it happens in Medi-Cal.

What do you feel is the most glaring example of illegal discrimination against people with disabilities today?

MARTY: The lack of access, not only in public places, but in homes too. It’s not just physical access – which is how people think of that term. In the 21st century how is it that new buildings and sidewalks are still being constructed or renovated and yet often there is a problem in access? Nothing will be 100% perfect, but we are falling far short of that, and it is because government is failing to do its job to enforce that right. It is one of enforcement, and it is one of education. Look at how government at all levels is pushing “green standards,” not only in making changes to laws to enforce it, but in education outreach. Government at all levels could have easily included the issue of access in those efforts – and it is something we will be pushing for.

Tied to access is discrimination by others in a neighborhood or in a community against a person with certain types of physical or psychiatric disabilities who may look different or is viewed as different, who may need support staff, or who lives in a group setting with others. There have been acts of cruelty and hatred in many areas of California, fueled by misinformation, by a lack of tolerance and understanding and prejudice, which have forced people out of their homes. People who do that are otherwise good people who somehow think that a certain type of physical or psychiatric disability represents a danger and threat. The irony is, the only ones who have caused danger and made threats are those very same people who have done that to people with certain types of physical or psychiatric disabilities.

Thus far, the majority of my questions are focused on the fight to maintain the rights of the disabled community. Besides maintaining the rights that have already been fought for and recognized, what efforts are currently being made to expand the rights and freedoms of the disabled community? (Specifically in regard to physical or psychiatric disabilities, or those with developmental disabilities.)

MARTY: Inclusion – real inclusion in one’s own community. As I mentioned before, there is a profound growing prejudice among many people in many communities against those who have certain types of physical or psychiatric disabilities who may look different, have different support needs, who may speak differently or have different behavioral issues. That should not cause anyone to be afraid, and yet some people will view that as not normal, and therefore a threat or danger to them. When that happens, good people can do terribly bad things – and discrimination caused by that – which turns into hate without reason – denies other people – people who have certain types of physical and psychiatric disabilities the freedom and right of inclusion, of living in their own homes of their own choosing. That hatred and discrimination, can force people into institutions as the only choice. We cannot let that happen anymore.

Given the difficulties of passing the state budget, how do you foresee the rights of people with disabilities, and the service systems that serve them, being affected?

MARTY: Obviously when deep cuts are made year after year to health and human services in general, and specifically to services and supports for people with disabilities, for people with mental health and psychiatric disabilities, for people who are seniors, for families and community organizations and workers who provide those services, then the impact is huge. These cuts impact a human life – a child with autism, an uncle with Multiple sclerosis, a brother with a mental health need, a sister with a traumatic brain injury, a grandfather with Alzheimer’s, a grandmother who is blind, an uncle who is deaf, an aunt who was injured in the war, a friend with Cerebral palsy, or a neighbor who is a low-paid support worker. Sometimes government – and sometimes even our own community – forgets the human life and thinks only of the budget numbers.

Over 16 times since 1991 California has suspended – cut – the small grants (SSI/SSP – the federal and state supplemental security income/state supplemental payment program) that hundreds of thousands of people with disabilities, the blind, and lowest income seniors depend on. Somehow California is better than that – better than harming its own people. Or it should be.

Is there any specific subgroup of people with disabilities (those with physical disabilities, psychiatric disabilities, veterans, seniors, children, etc) that you feel is being overly neglected or threatened by looming budget cuts?

MARTY: I do think that cuts have a bigger impact to people of color, for various reasons. Some of it is cultural. Some of it is a lack of outreach, especially in languages that people can understand. A lot of it however is deliberate, in denying people needed services and supports. I am not speaking of – in this instance – people are not documented to live here. I am speaking of children and adults who are citizens or who are living here legally equal to anyone else and yet are denied basic rights time and time again.

Besides direct actions such as attending protests, how can people make their voices heard regarding disability rights and the pending budget cuts by those in power making decisions?

MARTY: People need to be visible, to make themselves counted – and to stand up for others if they are treated badly. When we fail to do that, when we fail to speak up when we or others are being discriminated against or harmed in other ways, then bad things are certain to happen to us as a community. Just learning not to be indifferent in one’s own neighborhood is a start. Are your neighborhood schools, stores, libraries treating people with respect that includes inclusion? If not, have you spoken up about it, either to your local government representative, or state government representative or to others in your neighborhood and community?

That in part is holding ourselves accountable – for not being indifferent to discrimination and harm that is happening where we live, but perhaps may not directly effect us because, for example, it’s an act of discrimination against someone who has Down syndrome who uses a wheelchair, and you don’t have that particular disability. We are one community together.

The other part is holding others accountable for their actions – or lack of action. That includes government legislators and other local and state and federal officials. Finding out how your elected representatives – state and federal – voted on issues important to us, like Medi-Cal, like in-home services, like mental health services, issues impacting veterans with disabilities and mental health needs, special education, employment for people with disabilities and mental health needs, and senior programs. Did they vote to cut or limit further eligibility for those things in the name of saving money? Most Californians never ask their representative how they voted – and so those representatives use that indifference for further action against us. You don’t have to be a bad person to do that – its human nature to do the easiest thing when confronted with a difficult set of problems. And we – as a community of people with disabilities, mental health needs and seniors – often make it too easy for them to do the wrong thing.

What are some important recent victories in the disability rights movement?

Marty: Most recently, there has been a significant victory by the Medicaid Defense Fund headed by Lynn Carmen, a tremendous disability rights attorney, with the help of attorney Stan Friedman, to stop the provider cuts to Medi-Cal last year and again in February this year, in federal court decisions that were surprising, huge and profound. The victory meant that people with disabilities and seniors could sue in federal court to stop these kinds of cuts, and also stopped the State (California) from taking a course of action that would have meant denial of critical health care for our community.

I think there have been important victories in other areas, in terms of access rights through recent court decisions dealing with state parks and other public places.

There have been important victories too in our budget fights to stop devastating cuts, since 2001, including expansion of federal funding for many programs – including in-home services, that has meant more people can remain in their own homes and communities.

Still, with all these victories – like any victory actually – it depends on all of us to make sure the victory is not temporary – but a permanent advancement of rights.

Could you name a few individuals or organizations working in disability rights today that you admire?

Marty: For me, I have in mind many friends – including those who have died – who are known widely, but in their own way and in their own communities made a difference. My sisters – on a personal level. Warren Mattingly of San Luis Obispo who had significant developmental and physical disabilities, but even more significantly, helped to inspire his friends and community in advocacy, including voter rights. Shirley Klein, who wrote beautiful poetry and inspired me and so many others with her writings. She had developmental and physical disabilities but it is her words we remember even more. Neither was well known beyond their own communities – though Warren actually had a bill named after him that I worked on dealing with disability voter rights last year (2008). But they are both examples of overcoming indifference and using their ability and talents to connect to others, and in doing so, advancing our rights.

Lastly, what change in the world do you most hope to see happen in 2009:?

Marty: If we overcome indifference – our own and that of policymakers – then much of what we hope for can be achieved.

To learn more about California Disability Community Action Network (CDCAN) and current developments in legislation that impact people with disabilities, visit the CDCAN Web site at http://www.cdcan.us/.

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People With Disabilities Foundation is an operating 501(c)(3) nonprofit organization based in San Francisco, California, which focuses on the rights of the mentally disabled.

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Advocacy: PWDF advocates for Social Security claimant's disability benefits in eight Bay Area counties. We also provide services in disability rights, on issues regarding returning to work, and in ADA consultations, including areas of employment, health care, and education, among others. There is representation before all levels of federal court and Administrative Law Judges. No one is declined due to their inability to pay, and we offer a sliding scale for attorney's fees.

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