Disabilities Awareness Month

In recognition of Disabilities Awareness Month (October) Indian Time is featuring articles on community members in Akwesasne who have a disability they’d like our readers to better understand. Our second featured community member is Hilary Jacobs, who has Osteogenesis Imperfecta (OI).

Jacobs, age 32, was born with OI, which is commonly referred to as “brittle bone disease.” The disorder makes Jacobs’ bones too fragile to grow normally and people who help care for her have had to use caution anytime they move her. She has been using a wheelchair since childhood.

“My mom used to come in to school and ask the kids if they could break a toothpick,” Jacobs said. “Basically, that’s how my bones are.”

There are varying degrees of OI and while it’s considered a genetic disorder, Jacobs falls in the 5 percent that isn’t hereditary which unfortunately means the symptoms are more severe.

Jacobs parents, Julie and Robert Jacobs, learned their daughter had OI when she was in the womb. After she was born, doctors gave her three months to live and she suffered many broken bones at an early age. People encouraged her parents to institutionalize her and said “She’ll never get off a pillow.”

However, her parents were determined to give Jacobs the best life possible and they have.

When Jacobs was 5 or 6 years old, her parents took her to Shriner’s Hospital in Montreal for what she thought was an appointment. Instead, the doctors were ready to wheel her into the operating room to straighten her legs with rods. Along with having small/short legs and arms, her legs are also curved and she sits with her feet almost tucked under her in her wheelchair. She was scared of surgery and remembers asking the doctors, “Will I be able to walk if I get this surgery.” The doctor said, “Well, no you won’t.” She said, “Then I don’t want it.”

Jacobs never considered surgery again to “correct” her limbs and saw no benefit in having straight legs.

“I’m comfortable,” she said. “I like having my legs under me. If I let them put rods in, my legs would be dangling, or sticking out (and) in the way.”

So, Jacobs accepted her disorder at an early age, and doctors told her parents to use trial and error with every issue they encountered. When her mom was having a hard time leaning over the bathtub every day to bathe her, Jacobs’ father took an old, small bathtub and built a wooden shell around it, installed some plumbing, raised it several feet off the floor and had created a tub that Jacobs’ mom could stand at. After the baths, a mattress is placed on top of the wooden shell and the structure serves as her bed as well.

“My father is really inventive,” Jacobs said.

One time when she had broken her leg, her father cut some Coca-cola bottles to use as a cast, because doctors couldn’t place heavy casts on her bones. The plastic bottles helped to keep her leg in place every time her family moved her.

Many of the alterations they’ve had to make are to protect Jacobs, as any strong movement can and has broken her bones.

Since her arms are small, Jacobs looked into tools to help her reach things better but she found that items made for people with disabilities aren’t necessarily made for people with OI. The metal sticks and poles used to help individuals grab things are too heavy for Jacobs’ bones to lift. So, her uncle got some light metal sticks and built her her own tools with different tips on them to help her hook things.

Part of wanting their daughter to grow up normally meant Jacobs’ parents sent her to school beginning in Headstart (age 3).

“We figured that the more people in the community knew about her brittle bones, the more comfortable they would be,” said Julie Jacobs. “The parents had a harder time than the kids did adapting. The kids would forget she was in a wheelchair. I always thought that was so funny.”

Jacobs, who lives at home, has had a personal care provider for the past thirteen years, provided to her by a Cerebral Palsy program in Malone. “Sherry” spends the day with Jacobs, cooking for her, getting her things she needs, helping her with errands she has, and of course being a close friend. In the evenings and on weekends Jacobs spends time with her family and friends living a relatively normal Akwesasne life. She loves to watch lacrosse games and is a huge racing fan. On Friday nights all summer long you can find her in the pits at the Mohawk International Raceway.

Jacobs and her family have attended many OI conferences where she meets others with the disorder and enjoys seeing the similarities and differences. People with OI are picky eaters, Jacobs said, and she herself refuses to eat any meat besides hot dogs and bologna. Go figure. She also hates vegetables.

Jacobs has also noticed that people with OI look alike, a little fact she finds amusing.

Interestingly, despite having a disability and being confined to a wheelchair, Jacobs said adults rarely question her disorder.

“I’ve never had anybody other than kids ask me what I have,” she said.

The reason might be that most adults in Akwesasne already know Jacobs, while others might be shy or intimidated. They also may feel questions would offend Jacobs, which isn’t the case at all.

“I just look at it if they want to ask, ask,” she said. She has no reservations about it.

Although it’s pretty easy to forget Jacobs is in a wheelchair, it’s also hard to miss her shiny new wheels. She just recently received her newest wheelchair, which has a feature none of her previous ones have had which is a lift. She’s gone through about five electric wheelchairs since grade school (push chairs and strollers were used before then) but her newest one gives her the freedom to move up and down which has been enjoyable for her as she can reach new things.

Other improvements in technology have taken place with the van her family uses. In the past, she and her caregivers would need to stand out in the snow or rain while they placed her on the van lift and maneuvered her in. Now she carries a remote that controls the van from anywhere nearby and she can have the doors opened and lifts lowered all while she’s still sitting in her warm, dry house. Then, she’s able to steer herself out on her own and get inside the van all with the remote control. It makes the process smoother and quicker, and gives Jacobs more independence.

Jacobs’ wheelchairs provided her with much fun when she was a child. She recalls going in the woods with her cousins and using her wheelchair to pull rocks out of the ground. Another time, when she was around 11 years old she was pulling two of the neighbor kids around the neighborhood with rope. However, their fun game was cut short when Jacobs tried to do a “U-ey” and jerked forward in her wheelchair too quickly, breaking one of her bones.

“That’s the downfall is the breaking,” she said, but she remembers her childhood stories fondly. Another time she didn’t want to go to the doctor and threw her arm back against her chair in protest.

“Yeah, it broke,” she said smiling of her hand.

As trial and error worked its magic, Jacobs and her parents saw fewer and fewer broken bones and aside from a hospital accident recently, she hasn’t had a broken bone in twelve years which is significant in the OI world.

Jacobs is inspiring because she has learned to live a normal, fulfilling life and enjoys all the things everyone with strong bones enjoys. Her favorite TV show is Grey’s Anatomy, she is addicted to her ITouch, she talks on the phone to everyone, plays on her computer, goes to sporting events and family get -togethers and does lots and lots of traveling.

When she was hospitalized earlier this year for complications from pneumonia, Jacobs’ family and friends were lost without her, not knowing who to call for phone numbers, or who would help them work their high-tech gadgets.

“She’s the glue that holds this family together,” said her grandmother Louise Cook.

OI makes it difficult for Jacobs to have a job although she could if she really wanted to. For now, she’s comfortable being at home and someday said she might consider adding on an addition to her parents house that would be her own personal place, with them close by if she needed them.

“It’s not as scary as you think,” she said of her disorder. “You get accustomed to it and used to it. Yeah I do wish I could walk but I get out and do so much that it doesn’t cross my mind as much.”

Having fragile bones and being confined to a wheelchair might dampen some people’s spirits but Jacobs lives a busy, fun-filled life and always has.

“I grew up pretty much doing what everyone else did,” she said. “I’ve been raised not to feel guilty or upset about what I have. Only when I get hurt, then I get a little angry. But my mom says, ‘There’s always someone worse off.”

Thank you Hilary for allowing me into your home and sharing your knowledge and feelings about Osteogenesis Imperfecta with our readers.