Wheeling into the Future
Lack of services holding down disabled people on reservation

Julia Denetsosie talks Saturday from inside her home in Kayenta, Ariz., about the changes to her life since she was involved in an automobile accident and became a quadrapalegic. Denetsosie is a single-mom with three children who finds that leaving her house has to be planned days in advance and because of limited accessability to places she does not able to leave her home often. (Photo by Jeff Jones/Independent)

By Pamela G. Dempsey
Diné Bureau

KAYENTA — Julia Denetsosie and her three children are like any other typical single-parent family.

She wakes up the kids for school every morning and worries about them if they're late.

Friends and family come in and out throughout the day, the kids have posters on their walls, and the family pets two cats might greet you at the door.

There's a pig in the doghouse and the dogs hang out in the garage, but Denetsosie said its only temporary.

But this typical family lives with one very big adjustment: Denetsosie is quadriplegic.

A car accident six years ago put Denetsosie in the electric wheelchair she now lives in 12 hours a day. Although her kids and sister were with her, she was the only one injured.

The accident forced her to move from California back to Kayenta and her life was permanently changed.

"It's kind of hard to raise my kids," she said. "There's nothing you can do about it if they get into trouble and it stresses me out. If they have to stay after school, it's hard to pick them up."

A day for Denetsosie starts at 7 a.m. when she wakes up her children. She'll lay in bed until 9 a.m. when her assistant arrives. She exercises twice a day and showers every other day. Her assistant comes back at night to put her to bed.

Because Denetsosie gets cold easy, she doesn't go outside too much. But when she does, she has to schedule transportation two to three days in advance for appointments she's made.

"I have to keep ahead of everything," Denetsosie said.

Her biggest obstacle is transportation.

"I don't have an accessible van," she said.

Lack of services
It's a problem not uncommon to others living with disabilities on the reservation.

While city-life offers multiple services to those with disabilities, the Navajo Nation does not.

Lack of funds, lack of infrastructure and possibly lack of awareness, severely restricts what disabled people can and cannot do.

Transportation is a major problem, said Gordon Zeena, a disabled man who is now wheelchair-bound a majority of the day.

Zeena said the disabled are in need of a wheelchair-accessible van and better enforcement of handicap parking spaces, which are often taken-up by able-bodies drivers.

"It would help them go to work and take them places," he said. "A lot of them lose interest in school."

Zeena, and his wife Beverly, are part of a support group which meets twice a month. They also tap food banks to bring groceries out to elderly and disabled residents living outside of Kayenta. Last year, Zeena said, they delivered close to 3,000-pounds of food.

Their group, Toh' di'neesh zhee Support Group, is trying to link-up with other tribes and border-town groups to bring better services to their area.

"I guess, all-in-all, we want these guys to be involved in their community instead of being isolated at home after their accidents," Beverly said. "It's not the end of the world and they need a lot of support. Accessibility is an important issue as well as family involvement."

Sometimes family involvement is what disabled people don't have.

Add that to lack of services, lack of transportation, and lack of support and many disabled find themselves isolated and depressed.

"When you go out in the Kayenta community, you don't see a lot of people with disabilities," said Talley Sjoberg, a social worker with Kayenta High School's Exceptional Student Services. "It's not accessible."

There are 961 high-school students and Sjoberg currently works with the only two in wheelchairs. If families don't have transportation, she said, especially accessible transportation, it makes it hard on the student.

One 17-year old girl, whose spinal-cord injuries are nearly two-years old, boards the school's only lift-bus at 5:30 a.m. for the two-hour ride to school and has to leave 30-minutes early to catch the bus for the two-hour ride back home.

The rough, dirt roads are hard on her back, Sjoberg said, and often times her back seizes up.

"I'm really pleased both students stayed in school. This changes teenage life dating, dancing, and movies" Sjoberg said. "There's not a lot of venturing out in the community because it's such a hassle.

"Both girls are resilient," she said.

But the adjustment is hard, said Dr. Ellen Rothman, a local-pediatrician.

"They're going through a really huge emotional adjustment," Rothman said. "It's hard to really know how hard to push them for recovery."

Rothman became involved in the support group after one of her patients suffered a spinal-cord injury and Rothman saw first-hand how much she needed services.

"Recovery really happens at each one's own pace," Rothman said. "They (then) do something that makes them feel their lives are worthwhile."

Life after injury
Gleve Isaac can relate.

His own spinal-cord injury put him in a wheelchair 18 years ago.

He faced his own obstacles when he returned home to Cowsprings from rehabilitation in Denver and found a lack in accessibility and services.

"A lot of people on the reservation still lack health care programs and benefits," Isaac said. "There's not hardly any support groups and we need that. (We need) to talk to people with the same issues, to share information. The bottom line is we want to become self-advocates for disability rights."

The Navajo Nation Government, he said, has not adopted the American Disability Act, which limits how accessible tribal offices are.

"We need to adopt that," he said. "That way, it can be enforced. If our rights are violated, we have recourse."

Bringing more services, training, physical therapy, and rights to those with disabilities on the reservation might help them overcome their fears, find a job, and pick up where they left off, Isaac said.

"I would like for them to know that there is life beyond disability," he said. "I personally went back to school and do a lot of advocacy. They can still do a normal life like normal able-bodies people. They can live an independent life at a the least non-restrictive environment."

— To contact reporter Pam Dempsey, call (505) 879-1707 or email pamelagdempsey@msn.com