People with Disabilities Magazine | June 2004 | Article.pdf

by Maryann B. Hunsberger

Ed Palermo is itching to put someone in handcuffs. The Robbinsville resident, 49, wants to accompany his bounty-hunter brother on a job assignment. “He goes after people who jump bail. I want to put the handcuffs on.”

Palermo could never have imagined doing that in the 35 years he lived in institutions. “In the institution, you couldn’t say how you felt about things. You had to do what they told you and you couldn’t speak up.”

He went to the Matheny School at four, because he uses a wheelchair and is blind. “My mother didn’t know what it was like in an institution. I missed my family,” he said. At age 16, he moved to E.R. Johnstone Training and Research Center. He didn’t like it at first, but he adjusted once he became friendly with staff members.

In 1991, DDD announced plans to close Johnstone. Palermo said he was “up in arms” about the idea. He wrote to the governor asking him to keep Johnstone open. “We fought to save it. We didn’t know what it was going to be like to live on the outside. I was scared and so were my friends. My mother had died and a lot of the staff told us scary things about the community.

“I thought other people might have needed it to stay open. We had a rally that they showed on television. I couldn’t go that day because I was working in a workshop, but they closed Johnstone and now I am glad.”

Palermo moved into a group home for a few months, then moved into a supported apartment in October 1992. He was happy with the change. “It’s good here. I like it better than Johnstone. The staff is nice here. I have more independence. Once, I did volunteer work at Robert Wood Johnson Hospital folding menus. I go to wrestling events, restaurants, Star Trek functions and baseball games.”

Baseball is his passion. He enjoys kicking back with friends and a few beers to listen to a game. He represented Community Options at a Trenton Thunder game, where its name was in lights. At a Phillies game, they announced his birthday, which was a thrill to him.

Personal care attendants come to Palermo’s apartment each day. They assure that he gets to doctors’ appointments, stores and activities. When he travels, they take him to bus stations and airports. They also cook, clean and do laundry.

Palermo travels quite a bit now. He has been to Florida, North Carolina, Hawaii and Jamaica for vacation. He often visits family in Detroit and Boston. He wants to see his 6-month-old niece in Detroit soon, as he enjoys being around babies. Palermo enjoys taking in a baseball game when he travels. “I love to travel and visit new places. I liked going to Tiger Stadium in Detroit. I saw the Tigers play Baltimore. I loved it!”

Palermo relishes living in his condo with a housemate. “I have good support people to help me. I work, I make my own decisions, I vote and I worship.”

His outlook on community life led him to join the SWOT (Seeking Ways Out Together) Team. He didn’t know what to expect when he left Johnstone and he feels that most people leaving developmental centers are afraid of the unknown.

“We go to various institutions and tell them how their lives would be better if they were out. Some are pretty scared. We assure them that there is nothing to be scared of and that their lives will be better. We tell them to not worry about it, because they will make more friends like we did. It is a lot better in the community. I tell them, “Come on. The community is calling your name.”

Advocacy is his passion now. “In 2001, I testified in Washington, D.C. at the New Freedom Initiative Hearings. This past January, I testified at our State House against restraints and aversive treatment for institutionalized children and adults”

The best part of living in the community is going to work and being with friends. He once tried telemarketing and didn’t like it but is happy at his current job, working in Princeton at the Daily Plan It, and office, conference and copy center owned by Community Options. “I help make coffee, answer phones, deliver faxes, clean the windows. I work all over the building and like it better then when I worked in a workshop.”

Palermo also likes setting his own schedule. “I don’t have set bedtimes. I can go to bed whenever I want. I can stay up as late as I want, eat whatever I want and watch whatever I want on TV.”

“I would never put a member of my family in an institution. I will never go back.”