Morquio syndrome

Donald "DJ" Biley was a teen when he had to stop using crutches and start using a wheelchair as his primary mode of transportation. A debilitating genetic birth defect called Morquio syndrome, which affects muscle development, forced him and his sister to be homeschooled.

"When I started walking on crutches, the school and my doctors determined that there might be some health dangers and liability," says Riley. "But today, there's Section 504 [of the Rehabilitation Act of 1973, and the Americans With Disabilities Act, which prohibits discrimination against qualified individuals with disabilities], so now you have the right to reasonable accommodations and every right to be with normal people and have a normal life."

Although physical limitations have hindered Riley from what some may call a normal life, he's accomplished plenty, including earning two master's degrees in social work and public administration. "I've been able to take my physical disability and make lemonade ... and I'm trying my best to share it with as many people as I can," says the 46-year-old Riley.

One's ability to overcome adversity comes down to your adversity quotient (AQ) says Paul G. Stoltz, CEO of PEAK Learning Inc. (www.peaklearning.com) and author of Adversity Quotient: Turning Obstacles into Opportunities (Wiley; $16.95). "It's your hardwired pattern of response to life's tough stuff," says Stoltz. "What we've discovered is that most people have adversity quotients that allow them to do well most of the time, but when there is a lot of adversity, only about 10% have the ability to come back."

You could say that Riley has a high AQ. He hosts and produces an Internet radio talk show called What's Going On and is making plans to finish research on self esteem for the physically challenged and chronically disabled at the graduate level. "The World Wide Web [and radio] gave me a passport to a view of what's happening in society that many people like me don't get. So now I have unlimited access to encourage and uplift."

As he discusses plans to advocate for the rights of disabled youth and adults, Riley never uses his disability as an excuse. "I maintain a positive outlook by staying grounded in the fact that my limitations and obstacles are not mine personally, but ours collectively," Riley says. "I have to see myself as part of a group and understand that I'm not the only person who has to face these things and has accomplished [great things] in spite of it."

SELF-ADVOCACY RIGHTS

1 Know the law.

Federal laws such as the Americans with Disabilities Act and the Fair Housing Amendments Act are here to protect you.

2 Develop your resources.

Reach out to government, elected officials, and advocacy groups.

3 Assert yourself.

Contact resources via letters, telephone, and e-mail.

4 Ask for change.

Write letters, arrange meetings, make specific requests.

5 Follow up.

Always follow up with key organizations and leaders.

Excerpted from Taking Action: A Step-by-Step, Self-Help Guide to Becoming a Self-Advocate & Making a Difference (www.unitedspinal.org)

COPYRIGHT 2004 Earl G. Graves Publishing Co., Inc.
COPYRIGHT 2004 Gale Group