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Executive Committee
Sandra Meehan - Chairwoman
Dara Fukuhara - Vice Chair
Nathan Say - Secretary
Lillian Gonzales Brown - Treasurer

Finance Committee
Wimm Aoki - Chair
Linda Ann Watson
Francine Kenyon
Lillian Gonzales Brown

By-Laws / Policies & Procedures Committee
Francine Kenyon - Chair
Winn Aoki
Brian Kessler
Rachel Corday

Nomination Committee
Dara Fukuhara - Chair
Pat Lockwood
Linda Ann Watson
Margaret Levy - Dohanos
Marc Mortimer

Legislative
Nathan Say - Chair
Sandra Meehan
Way Cabral
Pat Lockwood
Louise Horio
Francine Kenyon

State Plan, Monitoring & Evaluation
Dara Fukuhara
Brian Kessler
Sandra Meehan
Louise Horio
Ed Weil

Staff:
Sheryl Nelson - Executive Director

Dara Fukuhara's Speech

This keynote speech was given at an award ceremony, hosted by Governor Linda Lingle at the historic governor's mansion, Washington Place in Honolulu on October 12, 2006. The award ceremony recognized 2006 Employers of the Year in Hawaii.

Aloha! It is an honor to be speaking here today as we celebrate National Disability Employment Awareness month. Everyone should have the opportunity to live and work with dignity and freedom of choice.

The Americans with Disability Act has made it possible for people with disabilities to participate in society more fully than before, but much more needs to be done to remove all the barriers facing people with disabilities.

Although progress has been made in the last decade, too many people with disabilities remain trapped in dependence, owing in large part to bureaucratic obstacles that we need to remove. I hope my story will open your eyes not only to what people with disabilities can accomplish, but also to the significant problems that remain to be overcome.

The word “independence” can mean different things to different people. Edward Gibbon, the renowned English historian, called it “the first of earthly blessings.”

Unfortunately, for most people with disabilities, the blessings of independence come with limitations and restrictions. However, there are ways to overcome them. Let me briefly tell you my story.

At age 3, my doctors diagnosed me with Charcot Marie Tooth disease, a neuromuscular condition that affects the peripheral nerves and is usually characterized by the slow degeneration of the muscles of the feet, lower legs, hands and forearms. While I could walk when I was a child, by age 13, I was wheelchair bound. Today, I rely completely on others for assistance at home and work. I need help dressing myself, feeding myself and even pushing an elevator button to get to my office – simple, everyday things most people take for granted.

Although I am unable to fully function physically on my own, in every other way I am no different from YOU. When I was growing up, I had goals – attending and graduating from a university, getting a job and living a fulfilling life. And despite my physical challenges, I DO live a fairly independent life.

As a sophomore in high school, I dreamt of being a journalist. My family and teachers encouraged me to pursue my goals. I spent my high school years writing for the school newspaper, Na Hoku O Moanalua, and became the Editor-In-Chief in my senior year. I graduated magna cum laude from Moanalua High School and enrolled at the University of Hawaii at Manoa.

I brought my passion for writing to UH and joined the staff of the college newspaper, Ka Leo O Hawai‘i. While some people may have looked at my wheelchair and doubted my ability to work as a reporter, using a battery-powered wheelchair, I went to my interviews; holding onto a pencil with both hands, I taught myself to type fast; and using a tape recorder, I taped my interviews in lieu of scribbling notes on paper.

These alternative paths to independence enabled me to write my stories and meet my deadlines.

However, not satisfied with just being a writer, I worked hard to prove, if only to myself, that I was capable of doing the job of an editor. I gradually worked my way up from the position of features editor to, eventually, the job of managing editor. And in 2002 I graduated with a bachelor’s degree in journalism.

While I was in college, I started receiving assistance from the Division of Vocational Rehabilitation Services at the State Department of Human Services. DVR funded my personal care attendant, Greta Balabagno, who assisted me with my personal care throughout my four years at UH and, with the help of other government programs that DVR led me to, for several years after college. It was the help that Greta provided – and her successors in that work – that made it possible for me to accomplish all that I did.

After graduating from UH, I worked two years as a freelance writer for MidWeek. Freelancing gave me the opportunity to work from home. I decided to put my skills as a journalist to work and also started my own small business as a media consultant. DVR enabled me to start my own business by purchasing a laptop computer so I could produce my stories and manage my finances.

DVR played an integral part in helping me in achieving my educational and career goals. After experiencing freelance writing, I reached a point in my career where I wanted a change. Following the advice of a good friend, I decided to go into public relations and got a position at Communications Pacific, the number-one public relations firm in Hawaii.

Working at Communications Pacific was the best career move I could ever make. I have found my true calling in PR. I love helping clients achieve their goals, and I have met many influential business and community leaders. And it was CommPac’s CEO, Kitty Lagareta, who nominated me to serve on the gubernatorially appointed Statewide Independent Living Council, which I currently chair.

I am very fortunate to have been able to take advantage of these excellent opportunities. But my road to success has had its bumps and bruises. I found that if I worked full time, I could jeopardize my government benefits, most importantly the vital funding for my personal care attendant, who makes it possible for me to work in the first place.

Catch-22 is alive and well in 2006. And it confronts several million disabled people like me all across the country. I call us "the many few."

Working places federal SSI benefits and state-funded nursing services in jeopardy because it could allow people to earn enough to accumulate more than the allowed assets before benefits are cut. This is one of the main concerns I face if I were to get a raise or find a job with higher pay.

I decided to accept this risk because I could not continue living with the fear of the government controlling what I do with my life. Why should anybody have to live like this? But many people with disabilities do.

Without personal assistance, I would not be able to function independently at work. Although my mind and spirit are strong, my limbs aren’t. My assistant functions as my limbs. I need her not only to help me with my personal needs, but also to perform office tasks like filing, operating a fax machine, retrieving papers from the printer, and driving me to appointments with clients.

My assistant is as essential to me, a disabled person, as arms and legs are to everyone else. She IS my arms and legs.

All the assistance and services I receive are what allow me to maintain my precious independence, that "first of earthly blessings."

However, based on my salary alone, I am unable to afford the level of personal assistance that I need. So I am lucky to have not yet reached the point where assistance from the state and federal governments will be cut off.

Unfortunately, the cut-off point is well below where it would need to be if I – and all the others in my situation – were expected to fund a personal assistant out of our own resources. To be able to do that, disabled people would have to earn a salary capable of supporting not one but TWO people – themselves and their personal assistants.

For a variety of reasons, people with disabilities are often discouraged from working. Many go to college and graduate with a degree. But once they discover that their benefits may be lost by getting a job, they stay home and collect welfare.

What a waste of resources! What a waste of human talent!

This is damaging not only to the individuals condemned to a life of wasting away at home or in an institution – or even as a perpetual student. It is also unhealthy for society at large, which not only loses the economic and social benefit of this “human capital,” but must actually pay for their maintenance when they might otherwise be earning their keep, contributing to society and paying taxes.

A new survey released by the National Organization on Disability showed that employment of people with disabilities has not improved despite the Americans with Disabilities Act.

The ADA prohibits discrimination against people with disabilities, yet the employment rate for those with disabilities has been nearly flat for almost 20 years. In 1986, only 34 percent of working-age people with disabilities had full-time or part-time jobs. In 2004, the figure was only 35 percent. In 18 years, that is an increase of just ONE percent. Shouldn’t this number be greater?

People with disabilities are nearly three times as likely as the rest of us to live in poverty. Why must people with disabilities be penalized for wanting to work and take their place in society?

Some may say that there are state programs that help get people with disabilities a job without being penalized. Yet, these jobs are generally far less challenging than what many people with disabilities are qualified to do.

However, if more people with disabilities were encouraged to find a job of their choice and enabled to get off welfare, this would save the government money.

Just think … people like me will require personal assistance whether we are working or not. Except for very wealthy families who might be able to pay for it out of their own resources, this assistance, at some point in a disabled person’s life, usually becomes the financial responsibility of the government, one way or another.

People with disabilities should not be penalized for seeking to live independently. They should not be consigned to a life of welfare or institutionalization.

On the contrary, they should be encouraged to work and contribute.

But enabling people with disabilities to work requires a new way of thinking about dependency and independence, that "first of earthly blessings."

It requires a fresh look at how providing the assistance needed to put people in the workforce is a solid economic as well as social investment.

It requires a more realistic view of what the cut-off point should be in determining whether a working person with a disability can qualify for government assistance and how the state can supplement the federal dollars to continue the benefits a person receives.

It requires, before any of this can happen, much broader public awareness than exists at present.

That’s why, as a first step, it requires your awareness and your help in getting the word out.

Before I end this, I would like to thank DVR and their dedicated counselors for being a part of my journey to educational and career successes.

I would also like to recognize my employer Kitty Lagareta and the employers present today for seeing and believing in our potential as PERSONS – not persons with disabilities. But as a person who is qualified to do our job.

For that, and for keeping in mind what you’ve just heard, I thank you.