"I would prefer to be able to see. It doesn't bother me at all that I can't hear. I was born completely deaf so I have no experience with hearing," he said.

"But I was happy when I could see everything. When I was young, I could do anything. Ride a bike, play sports. Now I feel like I'm missing things. I just want to be able to see, to read stories, to see people."

The legally blind 34-year-old communicates through an intervenor trained to interpret the sights and sounds of the world for the deaf-blind through methods such as American sign language.

Mr. Riggillo has Usher syndrome, a rare genetic disorder that causes deafness at birth and deteriorating eyesight later in life. It is often accompanied by loss of balance.

With only 5 per cent of his vision left, Mr. Riggillo suffers from extreme tunnel vision.

He sees the world as if looking through a straw and worries he may lose even this limited sight in the future.

"When I was born, I could see clearly and gradually it deteriorated," Mr. Riggillo signs to intervenor Catherine Joll, who sits a dozen feet away from him, the distance he finds easiest on which to focus.

"When I was eight or nine, I would play with my friends and I would start bumping into things. I didn't know what was going on. When I was 15 or 16, I found out what I had."

Although he is not bothered by being deaf, losing another sense meant his window on the world began to close.

"At first, I didn't really know anything was wrong. I kept it quiet," he said, adding there is no family history of vision or hearing problems.

"My parents didn't know I was deaf at first. When I was a baby, they realized nothing (noises) would wake me up. When the doctor said I was deaf, they were really disappointed. When I was 16, they found out I was deaf-blind. There was a real sadness. My mother and father didn't know what to do with me."

Despite his disabilities, the married father of three leads a full life.

He met his wife, Tracey, who worked as a sign language intervenor at George Brown College's program for the deafblind.

"I noticed this girl who could sign. I introduced myself," he said.

"I was playing rugby at George Brown. She helped me intervene with the other players. But I've had to stop playing rugby. It's just way too dangerous for me to play now."

Mr. Riggillo holds down two jobs, a full-time one stocking shelves at a grocery store and a part-time position teaching sign language at the college.

While he can handle many household chores such as yardwork, cleaning, cooking "carefully, very carefully" and helping to care for his children, his link with the outside world is disappearing as his sight worsens.

When his wife is not around, he must rely on an intervenor.

But under the intervenor services program provided by the Ontario government, he qualifies for only 2.5 hours a week.

If he had been born deafblind rather than developing blindness in childhood, he would be eligible for up to 12 hours a day of intervenor services.

Mr. Riggillo, president of a support group for deaf-blind patients, decided to fight back, a battle featured in a documentary produced this spring by Ryerson University journalism students.

After running into a brick wall of bureaucracy at Queen's Park, he launched a complaint with the Ontario Human Rights Commission.

Officials there handed him a stack of papers, which, of course, he was unable to read. When he asked for help reading the documents due to his disability, the commission said it could not assist him.

That's when Mr. Riggillo turned to lawyer David Young, Ontario's former attorney general. Working pro bono, Mr. Young has launched a $50-million lawsuit against the province on behalf of Mr. Riggillo and five other deaf-blind individuals.

"It is discriminatory to not allow them to avail themselves of the opportunity to participate in our society, the opportunity to go to a doctor, to be educated. The courts seem very clear about that," Mr. Young said in the documentary.

"I say to you that the current situation offends the Charter of Rights and Freedoms, it offends the Ontario human rights code and it offends common decency."

Under the current system, the province spends $7.5 million for a year for intervenor services for 301 people.

About a quarter of those people are born deaf-blind and the rest develop the condition during their lives.

Those born deafblind receive about 75 per cent of the funding.

“I know from my experience, government is all about making tough but necessary decisions. I get that,” Mr. Young said in the documentary. “But the courts have been very clear that you can’t draw artificial and illogical lines and say ‘You get all these services and you don’t get all these services’ if people have the same challenges. That’s discrimination.”

The film also documents Oak Ridges MPP Frank Klees pleading with Community and Social Services Minister Sandra Pupatello to meet with deaf-blind residents who visited the legislature.

“Minister, all I was asking on behalf of this community is that you would take the time, even if it is only five minutes, to meet with them to discuss the specific request that they have been making of your ministry and they have had no response,” he said.

“I am not even asking you to agree with them. At least give them the opportunity to share with you their concerns. Will you please just agree to do that?” Ms Pupatello, who agreed to meet with the group, said the government has brought in independent reviewers to look at the entire system of intervenor services.

“I acknowledge that we have to do better in this area and to that end, we have already started by laying the groundwork to see how we’re going to solve the problem,” she said. “It will take more resources. That is a function that is very clear to me and we hope to be able to move on that.” Joyce Thompson, a consultant on deaf-blindness, said Statistics Canada estimates there are almost 70,000 people living with the disorder in Canada. She believes about 10 per cent or 7,000 live in Ontario.

“Persons who are deaf-blind don’t know there are services that can help them. They are a hard-to-reach population. They don’t have access to television, radio or print,” she said. “They don’t know where to go to complain or ask for help or even that there are services designed to help them.”

Five years ago, she helped establish the Canadian Helen Keller Centre, named after the world’s most famous deaf-blind patient.

“Helen Keller became famous because of what she called her teacher (Annie Sullivan) and what we would call today an intervenor,” Ms Thompson said.

“Twenty-four hours a day (she had help). Nobody else in the world has ever had that.”

While Mr. Riggillo waits for the government to complete its review and for the courts to handle the lawsuit, he hopes his worsening vision doesn’t further isolate him from the world. “I don’t want to lose my job and go on disability. I always try to be positive and think about the future, think about it positively,” he said.

“I used to think my life was pretty fulfilling. I feel that less now because I’m losing some things because my eyes are going. There are some things I can’t do. I can’t go outside as much by myself. I’m limited by what I can do by myself in the darkness.”

For more information on deaf-blindness, contact Canadian Helen Keller Centre at 416-225-8989 or at website www.chkc.org

Meanwhile, the third annual JuneFest marking Deaf-Blind Month will be held Thursday from 1 to 9 p.m. at Mel Lastman Square, 5100 Yonge St.

The event features free admission, the Blue Jays community cruiser, a barbecue, face painting, inflated jumping castle, information displays, performances by the Wonderful World of Circus and live music.

It is sponsored by Rotary Cheshire Homes and the Canadian Helen Keller Centre.

For more information, call 416-730-9501 or visit www.junefest.ca