Families marginalized by disability find warm welcome at Tower of David

It’s that time of year again. School will soon be out and parents are scrambling to make plans to keep their children busy over the long, hot summer. In addition to camps, many parents look to family programs at museums and cultural institutions to answer the challenge of passing the months of July and August.

While these family programs are offered at other times of the year, they are a godsend during the sweltering summer. Many parents welcome spending a day out together with the whole family, enjoying contemporary art or exploring history.

But there are some for whom an afternoon at the museum — air-conditioning notwithstanding — is not an enticing option. These are families with children with special needs, who are often made to feel unwelcome at museums and other public venues.

To be sure, museums do not purposely exclude families with children with special needs. Their family programs are open to all, but in reality, families with children with disabilities rarely show up because they just don’t fit in.

“We often avoid museums because of the crowds, the reactions from other people, and the lack of appropriate activities. It just ends up being stressful instead of enriching,” explained Gabrielle Shine Markowitz, a Jerusalem mother of four, the youngest of whom is a 5-year-old daughter with Down Syndrome.

However, Markowitz and her family had a wonderful time recently on two occasions at the Tower of David Museum in the Old City of Jerusalem. For both the Purim and Passover holidays this spring, the museum ran programs exclusively for families with children with physical, emotional and developmental disabilities.

There were art projects, games, puppet shows, imaginative play and other sorts of activities one would expect at holiday programs for families. The difference was that in this case, the museum was closed to the general public and everything was adjusted to meet the needs of both the children with special needs, and those of their neurotypical siblings.

While such specialized family programs are quite common in the US and UK, it is only now that Israeli cultural institutions — with The Tower of David Museum leading the way — are tuning in to the requirements of this particular audience sector.

“We could only accommodate 130 people at a time at each of these programs, and families had to RSVP. We put the word out through a few channels, and within hours all the spots were taken. We’ve got a long waiting list for next time,” said Rose Ginosar, who works in development at Tower of David Museum.

Indeed, the demand for such programs is so strong that families came from all over the country.

“The school holidays and the festivals are the hardest for us as a family as everyone else is out busy experiencing all the great things that Israel has to offer. But for us as a family, crowded places and lots of noise just don’t work. So we have never done anything like this before. It’s great to be doing something as a family and we have come especially to Jerusalem for this activity,” said a father of a child with special needs from Kfar Saba who attended a Passover program with his wife and kids.

Serving this particular audience requires creative thinking, extra staff training, and a commitment of resources.

“Even in this difficult period during which the number of visitors to Jerusalem, and to the Old City in particular, was down, we felt it was important for us to hold these programs,” museum director Eilat Lieber told The Times of Israel.

“We paid for these first two programs from our operating budget, but we will need to find sponsors and establish a dedicated fund in order to keep providing this critical service,” she added.

The Tower of David partnered with Shutaf, a Jerusalem-based organization that runs inclusive informal education opportunities for children with disabilities, in designing and preparing for these programs.

“When you reach each kid, you are being inclusive. You put the child at the center and meet his or her needs within a group experience regardless of whatever label or diagnosis that child has,” Shutaf co-founder Miriam Avraham explained.

Beth Steinberg, who co-founded Shutaf with Avraham, emphasized the importance of welcoming families with children with disabilities into spaces such as the Tower of David.

“These families feel marginalized by disability. These kinds of programs provide a special welcome and allow these families to meet one another and feel the power of community, often for the first time,” she noted.

‘These families feel marginalized by disability’

According to Steinberg, the museum’s successful approach was sophisticated in thought, but relaxed in application. This involved closing the museum to the general public (or opening the museum just for these families when it is normally closed) and limiting the number of program participants. The environment was deliberately low-stress, to the point where art projects did not involve any expectation of creating an end product.

Families were free to go anywhere in the museum’s galleries and watch the museum’s Night Spectacular sound and light show (with brightness and sound adjusted slightly down for this audience). Eating was permitted, and a quiet room was provided for children who felt overly stimulated and needed to go somewhere without noise and distraction for a while.

“I can tell that the museum is working on how to be inclusive of families like ours without being exclusive. The facts that extended family members and friends were invited to come with us, and that the Night Spectacular was open to the general public on the evening of the Purim program, shows this. What has to be figured out next is how the museum can be open and accessible to us at all times,” Markowitz said.

‘…for us as a family, crowded places and lots of noise just don’t work. So we have never done anything like this before. It’s great to be doing something as a family’

The Tower of David Museum has looked to cultural institutions in London for guidance on how to develop not only its own programs for families with children with special needs, but also on how to establish a network of museums in Jerusalem — and perhaps throughout Israel — that will follow suit.

“If a variety of museums will offer programs for these families, then there will be somewhere for them to go on a regular basis. For instance, each museum in the network could take responsibility for offering a program on a different holiday,” suggested Tower of David Museum spokeswoman Caroline Shapiro.

Molly Bretton, access manager at the Royal Academy of Arts in London, has shared her experiences with Tower of David staff. She believes that the initial focus should be on building confidence with parents of children with disabilities and creating programs exclusive to these families — before working on how to welcome them at regular family programs.

“It’s important for these families to be somewhere where they don’t have to explain anything, where they can just be, and where the siblings are not embarrassed,” Bretton said.

For her programs in London, she puts a great deal of effort into figuring out the best ways to engage each child with special needs.

‘You are being inclusive when you put the child at the center and meet his or her needs within a group experience regardless of whatever label or diagnosis that child has’

“For instance, if there are a number of kids with visual impairments, then we will have a lot of tactile materials on hand. We have figured out how to work with kids with feeding tubes, who may need to lie down,” she said.

“It’s hard to get it 100% right, as we all have changeable personalities and you never know how a child might be feeling or behaving on the day. You have to be flexible,” she added.

Flexibility also pertains to working with neurotypical siblings. Bretton designs “layered,” or multi-step, activities. The siblings will likely be able to do all the layers involved, while the child with the disability may do fewer of them. What is important is that they all get to do the same activity together.

Orlagh Muldoon, who works mainly with schools and teachers at London’s National Gallery emphasized the importance of communication across the museum when children with special needs are on site — no matter who is accompanying them.

“It must be clear and everyone on staff must know that the children are on site. Medical and assistive equipment needs to be ready and there needs to be an emergency plan, which in some cases might just mean having a quiet room available,” she said.

Bretton and Muldoon are members of a large network of museum, gallery, school and freelance art educators who meet quarterly to share best practices in pedagogic approaches and programs for working with children with special needs.

Shapiro, who made the initial contact between the Tower of David Museum and this London network, would like to see a similar network established in Jerusalem. A commitment from Jerusalem’s Old Yishuv Court Museum to offer a program specifically for families with children with special needs already early this summer makes her hopeful it will happen.

“Israel is a leader in so many fields, but when it comes to museums creating new opportunities for families who might otherwise feel excluded, there is much for us to learn from the experiences of others,” Shapiro said.