Where What When

Put Yourself in Your Neighbor's Shoes - or Wheelchair!

What is it like for a person who has a disability?

What is it like to parent a child with a disability?

What do you do when you see a person with a disability?

February is JDAM, Jewish Disability-Awareness Month. Put yourself into someone else's shoes - or wheelchair, or head, or ears, or eyes at least some time during this month. Reach out of your comfort zone, empathize, and act on your inspiration from the following individuals, who share a mere glance into their lives. So that the interviewees could speak candidly with WWW readers, all names and identifying details have been changed.

A Day in the Life of a Parent

"Our day starts at 4:00 a.m., because we have to get ourselves all ready before we wake Leah," begins Mr. Glassman. Leah's school bus comes to pick her up at 6:45 a.m. As a young adult with a progressive developmental disorder that allows her extremely limited mobility, Leah needs help with everything. Her mother changes her pull-up, dresses and feeds her, settles her into the wheelchair and bundles her up for the cold weather, with help from Mr. Glassman. When Leah arrives home at 3:00, her every need requires assistance until she goes to bed at 8:00 p.m. An added stress is that Leah has no control over her emotions and her moods swing like a pendulum. This dumps remarkable tension on the other children in the family.

"Our worst fear is that Leah will fall," her parents assert. "She can never be left alone, because if she tries to get up, she might fall and not be able to stand up. Since she is dead-weight, it takes two people to pick her up again. Everything revolves around making sure she doesn't fall." Leah is trained to stay in bed once she is settled in bed, so, b"H, the family does not have to worry about her attempting to get up during the night. While Leah could stay in her wheelchair all day, most therapists agree that this would cause her to lose whatever mobility she still has at a much quicker rate.

An aide comes to work with Leah almost every afternoon. The family might be eligible for additional services but they were advised not to apply. They were told, "With so much budget cutting going on, you don't want to call attention to yourself or they might cut the services you already have!"

Mr. Glassman confides that it has been years since he and his wife have felt comfortable going away alone. In the last 10 years, they have vacationed only once, because the cost of hiring someone to care for their adult daughter is astronomical. They cannot hire a regular babysitter, because most girls do not want to change a dirty pull-up on a girl their own age.

"Menuchah and Camp HASC are the two best things in Leah's life!" raves her father. Twice a week a Menuchah volunteer picks Leah up for a few hours of social interaction in a frum environment. Since it requires no assistance from the parents, it is truly a cherished blessing for the families of children with special needs. Camp HASC provides a spectacular Jewish experience for Leah and a much-needed respite for her family for seven weeks in the summer. The CJE's Gesher LaTorah Sunday school is also a terrific Jewish program, so the family makes the effort to transport her back and forth, despite the tremendous effort this entails.

Until recently, the JCC had a fantastic program every two weeks after Gesher laTorah, called Sunday Funday. It provided subsidized busing for the students from the Park Heights JCC to the one in Owings Mills, where they played and enjoyed activities until 4:30. Mr. Glassman recalls, "Every other week we had a Sunday! We paid for it, but it was available. While we all love Shabbos, you cannot take care of things on Shabbos. It was wonderful for her, and it was wonderful for the family!" This year, however, not enough people came from the Park Heights JCC, and the bus is no longer provided. Now the Glassmans rarely have a day when the two of them can go out together or do things with the other children, unless they find someone to watch their daughter.

Leah's illness will get worse with time, and her parents don't know what to expect down the road. In a couple of years, Leah will phase-out of the public school she attends, and her parents have no idea what she will do all day. "We are afraid that she will need more help than we can give her at home and could end up at a place like Catholic Charities, chas veshalom, like other Jewish individuals we know," bemoans her father. "The Baltimore community is light years behind where it should be in dealing with these kids," he continues. "There is no reason children have to be shipped off to a distant city, away from their families! It's a crime and a shame that our community can't put together the resources to take care of children like Leah and her peers." The family recognizes that there are many wonderful people who want to help. At the same time, the community as a whole is not doing enough. "Other cities have school programs and residential programs that cater to the Jewish special-needs population. Despite the thousands of dollars spent on all kinds of programs in Baltimore, the children who need it the most are left, once again, to watch from the side."

Over the years, a steady parade of volunteers have come and gone through the Glassman home. None has stayed long enough to establish a real relationship with Leah. But a few years ago, one girl did. The Glassmans vividly recall Shoshana, who came religiously once or twice a week to review parsha, make projects, and spend time with Leah. This enthusiastic volunteer would come with trinkets to let Leah know she was special. Shoshana's commitment to coming on a regular basis allowed Leah to eagerly anticipate her visits without being let down. The Glassmans pronounce fondly, "She made a difference in Leah's life!"

A Parent Speaks for her Child

"There's Elmo's world, there's Avrohom's world," Mrs. Gold says. "His thought processes are different. It's hard to be him."

Mrs. Gold is the mother of Avrohom, age 11, who is effected by bipolar disorder. "He doesn't have the maturity of an 11 year old," Mrs. Gold states. "He can still tantrum, whine, and scream like a five year old. With Avrohom, it's hard, because he looks normal, but he's not, and you'd never know that by looking at him. We used to not be able to take him anywhere."

Dealing with Avrohom's outbursts, behaviors, and mood swings is a never ending challenge. "Anything could set him off," his mother declares. "And what sets him off today won't set him off tomorrow; once we think we know what it is, it isn't that anymore."

Avrohom may score three points in a game and insist he scored 40. "He perceives things differently from how they really are," explains his mother. Of course, this leads to difficulty making and retaining friendships. Avrohom does not have any Jewish friends his age.

"I don't dread Shabbos as much as I used to," Mrs. Gold reports with relief. Shabbos used to be her hardest day of the week. While other children enjoyed visiting with friends, Avrohom was alone. "He needs structure and finds it hard to occupy himself. Menucha provides volunteers to visit on Shabbos. But it used to be that if someone was supposed to come to play with Avrohom and didn't show up, my husband and I would be in tears - to say nothing of Avrohom!" Now, thanks to finding the right "cocktail" of medicines, Avrohom's behaviors are much more in control. "Getting the right meds is crucial," divulges Mrs. Gold.

Due to his special needs, Avrohom was forced to leave his Jewish school. "At first we were very unhappy," Mrs. Gold says candidly. "But once he started, we were very glad, because it became obvious that the Jewish school wasn't the right place for him. Once he was in a better setting educationally, he was better at home. It was the best decision we made." However, the Golds regret that with that choice Avrohom lost his Jewish friends.

When asked what the Jewish community has to offer her son, she answers without hesitation: "Programs like Menucha and Yachad. They give Avrohom a sense of belonging." Menucha arranges volunteers to visit with Avrohom, and Yachad organizes a mishmor program. "He loves going to Yachad's mishmor program at TA on Thursday nights. He's been going for years, and gets very upset when there's no mishmor!"

To ensure our readers would be "touched by a story," Mrs. Gold relates that Avrohom recently made a siyum on mishnayos brochos. Rabbi Spero came to the house to help celebrate. He gave Avrohom his latest book and even posed for photos!

In spite of not being at a Jewish school, Avrohom wants to grow as a Jew: "Can I go back to a Jewish school for high school?" he asks. His parents are undecided. They don't know whether he will be able to manage without the supports he is receiving currently.

Mrs. Gold's final message: "Like everybody else, these children are part of the community and should not be shunned."

A Day in the Life of a Person with Special Needs

Dov is a young man in his twenties who became wheelchair-bound a number of years ago as a result of an illness. He is upbeat yet realistic. Since he knows life both inside and outside the wheelchair, he is able to see the sharp contrasts between life with and without a disability.

A major factor for Dov is constantly being dependent on other people. "My schedule is dependent on when other people are available," he says. "Many people who come to visit me have no idea what I can or can't do," says Dov. "Ninety percent of the people who know me would be shocked at my limitations. I'm an adult, but I have to go to sleep when my mother goes to sleep." This is because it is impossible for Dov to transition himself from his wheelchair into bed without assistance. As if to illustrate his dependency, as he was speaking to the author, Dov's wheelchair got stuck in the rug, and he had to call his mother to disentangle him. Accepting help, though absolutely necessary, is hard for him. "I don't like people going out of their way for me."

Dov points out that sometimes people associate physical handicap with mental handicap. Although Dov is very limited physically, he is obviously very intelligent and articulate. "I don't like when people do things for me out of pity." He can tell when someone is spending time with him just because he is in a wheelchair, and not enjoying him for his company.

Since he is unable to drive, Dov appreciates people taking him out. He is thankful for friends who take him to Dunkin' Donuts and the like just to spend time with him away from home.

Like many older singles, Dov has lost touch with his friends and classmates. "They have families, homes, mortgages," he says, smiling. He is quick to point out that his classmates were amazingly supportive during his illness. "Before my surgery, I discussed with my magid shiur whether to tell the rest of the shiur about the surgery. I decided to tell them because I felt I could use their tefilos and their support, visits, etc. We told the shiur, and the bachurim spoke of sponsoring a seder/half day of learning as a merit for my recovery. In the end, they sponsored the learning for the entire day of my surgery!"

People came a lot at the beginning, when he was recuperating. Now, Dov feels people are unsure how to approach him - seeing someone who was well but is now handicapped. Dov sympathizes with people who don't know what do. "I feel bad for people. How do you deal with it?" He says he doesn't know what he himself would do if he were on the other side.

Dov maintains that even if people don't know what he's going through they should still interact with him. He recalls an incident that occurred before he was stricken with his disability. He was at a mesiba and a bachur from a Syrian background spoke. The bachur told everyone to freeze and not move, and to realize that, thank G-d, you can move out of it. Dov recalls, "He said to the boys - these were yeshiva boys - say "thank you Hashem," and the boys felt self-conscious saying that." But Dov stresses how true this is, and how sad this simple ability isn't fully appreciated until it's gone.

When asked if there is any message he wants to give to the Jewish community, Dov states emphatically, "We should appreciate our parents who are always there for us. And appreciate that we can inhale and exhale.we can walk and talk. Appreciate every little movement!"

SIDEBAR

What to Do When You See Someone with a Disability

by Esther Ward

With a small child: Smile and say "hello," from a just-close-enough distance that the child can see you are addressing him, but not so close that the child feels uncomfortable.

With an older child/adult: Make brief eye contact and acknowledge him/her as you would to a non-disabled person, with a nod or a greeting.

Don't assume that the person with a disability needs help with everything. Say, "If I can do anything for you, just let me know." And stay close by, so that the person can take you up on your kind offer.

Offer your seat to someone with a disability, even at shul, if that person has a hard time walking. Hold the door open for someone in a wheelchair.

At a kiddush, ask if he/she would like something. It is hard to get to the tables with a wheelchair.

It is hard to get through crowds with a wheelchair; ask if the person needs to get to a certain place, and offer to help clear a path by walking in front of the wheelchair. (To the person in/pushing the wheelchair, this feels like krias yam suf!)

If you want to volunteer but don't feel comfortable playing with a disabled child, offer to help with shopping and other household matters is greatly appreciated, because time and energy are so scarce in these families. As one mother says, "We need help because of the child with special needs - not necessarily for the child with the special needs."

If you are uncomfortable talking to someone with a mental disability, you can talk to the person accompanying him/her.

If a non-Jew is accompanying an individual, make it a point to greet them. If you're comfortable, ask their name and tell them what a wonderful job they are doing!

As a service to the community, Menucha, Inc., is available to answer questions that arise regarding "etiquette" concerning people with disabilities. Send questions to MenuchaInc@gmail.com

Esther Ward is associated with Menucha, Inc., an organization which supports children and young adults with disabilities in Baltimore. Thank you to Mrs. Yehudis Hexter for her input.

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Article List - February 2010