Legislative Breakfast
April 25, 2003
Speaker: Susan Hogue, Executive Director, The Epilepsy Network
While I am honored to be chosen to speak with you, it is you, the service providers, whom we are truly honoring today. What you do is so much more than just a job; you literally put your heart and soul in what you do, and we thank you.
You deal with people who think and see the world differently. When Al Hart was news anchor at KCBS in San Francisco, he asked me if he could tell a story on the air that I had related to him about our son Paul, who has epilepsy. He's heard this speech and ok'd it, but he's still embarrassed!
One morning I was rushing around, late, so I handed Paul my old watch and asked him to wind it. When he questioned my instructions, I realized he had never seen a watch with a stem. As he was winding, he exclaimed, "What a great new invention! We won't need to put batteries in watches anymore!"
Paul is a member of the Board of Directors for The Epilepsy Network and we were discussing some of the grant restrictions, like area limitations. Some grants are offered to specific places like Los Angeles County or the City of San Francisco, so we couldn't apply for those. Paul immediately suggested we get a large vehicle, like the library has, and drive it over to help people wherever the grant is funding!
Do you know someone whose life has been touched by epilepsy? Because we have almost 3,000 people just here in Santa Cruz County with epilepsy. And you may have heard of Vincent Van Gogh, Alfred Nobel, Edgar Allen Poe, Danny Glover, or former Congressman Tony Coelho, who authored the Americans with Disabilities Act---ALL have been touched by epilepsy.
So are people with developmental disabilities dis abled or are they differently abled? Do they not understand, or do we not understand them because their brains function differently from ours?
Many of you know how to help people with seizures. On a recent trip to Washington, D.C., I shared one of my experiences with the Health Aides representing Senators Boxer and Feinstein. One day while walking out of Safeway with Paul pushing a loaded shopping cart behind me, I heard a gasp, and turned to find him in full seizure, heading for the blacktop. I helped him to the ground as his head, body and limbs jerked violently. It lasted about 2 minutes, seeming like 20. People came running over asking if they should call 911, but I told them, "No, he's having a seizure, it'll be over soon." When the seizure ended, a couple of guys helped get him into our van; he was still unconscious. But one minute before this incident and one hour after, Paul seemed perfectly fine---perfectly normal, whatever that is!
Epilepsy is an 'invisible disability' when the person is not seizing. But without laws such as The Lanterman Developmental Disabilities Services Act of 1969, Paul could be put in a straight jacket and locked up in a padded room, as they used to do. The Lanterman Act provides for people like Paul to have opportunities---opportunities like access to an appropriate education, job, home and social life. Their hopes and dreams are now possible because of this law and with thanks to caretakers like you who make this dream, reality, and to our legislators Senator McPherson and Assembly Members Salinas and Laird, who have demonstrated their support for these services.
Today, largely due to The Lanterman Act, Paul has the opportunity to obtain a place of his own, with the aide of caretakers. He can work part-time while he pursues the education he needs for the computer job he so heartily desires. He can be a contributing citizen, instead of a burden on society, a tax payer instead of a tax drain. If The Lanterman Act is obliterated and services cut, it will dramatically change the lives of people with developmental disabilities who are largely dependant upon these services. Most of them will not have access to what they need to live satisfying, productive lives.
In closing, I'd like you to give this some thought: There is a much greater chance of you or a loved one developing a disability during your lifetime than one of you becoming a prisoner. I ask our legislators to closely examine the maintenance of the prison system budgets and compare with how our budget for the disabled is maintained…and when it comes time to decide where the funding needs to be, think of hearing that gasp and turning to see your loved one falling to the ground in seizure, and ask yourself if they should have the right to access opportunities and a 'normal' lifestyle, or if we should tie them up and lock them away in a padded room.
