ISAAC - http://www.isaac-online.org/ie
Mamaroneck man with cerebral palsy champions Darfur cause
http://www.isaac-online.org/ie/articles/354/1/Mamaroneck-man-with-cerebral-palsy-champions-Darfur-cause/Page1.html
By Nola Millin
Published on 11/7/2007
 

Reprinted with permission from Lower Hudson Online.

 


Approx. 2 printed pages

MAMARONECKMiles Forma sat on his right hand to stop it from flailing in the air as he took some time to steady his body on a recent afternoon at his family's home.

 

Forma, 20, who has cerebral palsy and cannot walk or speak, fiercely concentrated to control his other arm long enough to push a button on the machine he uses to communicate.

 

The topic of the discussion: the refugees in Darfur. He wants you to feel sorry for them, not for him.

 

"Africa needs help. Darfur is home to the first genocide of the 21st century," Forma said, using his electronic "voice," a DynaVox speech-generating device. "Over 400,000 people have died."

 

With his speech device, a personal computer, and a little help from his family and support team at his school, Forma created an informational presentation he gives to raise money for victims in the Darfur region of Sudan. To date, he has raised more than $5,000 from private donors for The American Jewish Joint Distribution Committee, a nonprofit group that has raised money for the victims of the conflict in Darfur and neighboring Chad.

 

He has advocated for the cause at his residential rehabilitation school, Crotchet Mountain in New Hampshire, each time reminding people how important it is not to ignore the atrocities that are occurring in other parts of the world. He will give his third presentation later this month.

 

Cerebral palsy is a chronic condition that affects body movement and muscle coordination, typically caused by damage to one or more specific parts of the brain. In some cases, people with cerebral palsy are unable to coordinate the muscle movement needed for speech.

 

Forma's determination is inspiring, in part because of the physical challenges he must overcome to compose himself.

 

"You can't help but be moved when you see the struggles he goes through to get a thought out," said Pat Martin, a nurse and electrical engineer who helps Forma with the technical side of his presentation. "He has to fight his whole body to make it cooperate, and you can see in his face that he is so passionate about this. He kind of makes the rest of us look like slackers."

 

Like many advocates, Forma put together a PowerPoint presentation he shows on an overhead projector. He moves the slide show forward using his DynaVox device.

 

"He really gets quite a tremendous response," Martin said.

 

Still, for children and adults with cerebral palsy and other disabilities, access to speech technology and training isn't easy.

 

Many families cannot afford the thousands of dollars to pay for the machines and their maintenance, said Izel Obermeyer, coordinator of school-age assistive technology programs at the Westchester Institute for Human Development.

 

"If I don't have sound evidence that the kids need this technology, it is very hard to convince the administration that this is a good thing to invest in," said Obermeyer, who also works as an occupational therapist for the Byram Hills school district.

 

The DynaVox is among the more popular speech devices on the market for people with disabilities, but there are a variety of computers and keyboards available, as well as touch-screen and word-recognition devices. Some of the most advanced technology uses the retina of the eye to move a cursor on a computer screen.

 

All of them help liberate a person with a severe disability from feeling isolated. This liberation often results in helping people with severe disabilities become economically sound, Obermeyer said.

 

As for Forma, who will graduate from school this year and will look for a job as a fundraiser for a nongovernmental organization, prospects are good.

 

Caseworkers at Cerebral Palsy of Westchester Inc. are working on finding Forma an apartment for when he returns to Westchester.

 

Because he already has work experience in his selected field, there are several local organizations to which he will send his résumé.

 

"I always tell him he's going to make a difference in this world," Martin said. "But I think he already has made a difference."