What Do You Want People To Know?

For Jewish Disabilities Awareness and Inclusion Month, we asked people with disabilities or special needs in their families: What do you wish other people knew or understood about: 1) You, your child(ren) with disabilities /special needs and/or your family; and 2) your experiences as person with or parent or family of a person with disabilities/special needs? Hopefully, you’ll get a better understanding and awareness of the lives of people and families with disabilities. Below are some of the responses:

 “I would like people to know that my daughter is just fine as she is. Get to know her and appreciate her unique and delightful personality instead of focusing on what you may perceive as deficits or problems. Don’t feel pity or sadness because she has a disability. People with disabilities are not walking tragedies or heroic for living with their challenges, just people trying to live their best life like anyone else. I appreciate that suggestions of medications or therapies come from a place of wanting to help, but she does not need fixing or healing. And neither she or I need sympathy, just a little extra patience and understanding.”

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“Having a disability has taught me some good things about how to live daily life and people should know how to live in other people’s shoes”

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“If people take the time to really listen and understand they will know that even though I might be hard to understand I have a lot to say”

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“It’s lonely! It’s difficult! Sometimes it’s hard to love our kids, and sometimes we love them more fiercely. We need our friends and family members to acknowledge how hard it can be for us – no judgment please. No pity either. Assistance in whatever way they can offer. And please include all of us in social gatherings, even though we are a hot mess!”

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“We are usually doing the very best we can and instead of suggestions of things to try or books to read about our child’s behavior etc. We need to be included where we’re at. I think people do not realize how different it is to know about a situation professionally versus personally.”

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“I feel really good about this community and the opportunities available to my daughter with special needs. However, what I wish people knew is that none of it comes easy. My husband and I have to be “vigilant” advocates for everything.  If there’s something we want her to participate in, we have to reach out and see if it can accommodate to her, and how, and meet with the staff ahead of time, and fill out extra paperwork, and prepare our daughter, and on and on. It would be great if some of that burden could be lifted from us and anticipated by some of these groups and organizations.”

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“When I asked our synagogue director what they had planned for Jewish Disability and Inclusion Month, he said ‘Well we don’t have many people with disabilities.’ This is very concerning. Just because one can’t see a disability, doesn’t mean one isn’t there. Besides, we should proactively plan to include these folks so they feel welcome when they need and want a community, not after they’ve somehow decided to join us despite the lack of accommodation.”

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“It hurts when people who were friends with us before we had kids or when our daughter was just a baby have now quietly stopped including us in social activities or reciprocating when we reach out. While we are so grateful and happy for the community that we’ve found since then and it’s possible that this is due simply to busy lives and changing priorities, it’s also likely because of our “differences”.”

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“Special needs are often things you cannot see and many children with special needs look just like every other kid. While on one hand, it might be a benefit to “blend in,” on the other hand, it results in people judging our special needs children according to standards that don’t apply to them. For example, just because a child ‘looks’ like s/he should be “old enough” to be able to sit quietly in a theater/service/event does not me s/he is actually able to do this. A child’s failure to ‘act their age’ doesn’t mean s/he is badly behaved and doesn’t mean the parent doesn’t set the right examples/rules/standards. Many children with special needs literally cannot control it. So please take the saying “don’t judge a book by its cover” to heart. Just because you think a child looks like every other child on the outside, you have no way of knowing what is going on inside.”

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“Special needs and giftedness are not mutually exclusive. In fact, many children with special needs also have very high IQs.”

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“My child attends a specialized school for kids with special needs. Every year he has a birthday party and we invite all the kids in his class. And on several occasions our invitation has been met with immense gratitude from a parent whose child has NEVER been invited to a birthday party before. This makes me both happy – that this child and family finally feels included – and so, so sad – that they never had been before. One child’s mom told me that this invitation meant so much to her child, who was telling people ‘I know X is my friend because X invited me to their birthday party.’ Including people, inviting people makes a huge difference and excluding them makes a difference as well. Kids with disabilities notice when they are excluded. And their parents notice. When you can, please be as inclusive as possible. Doing so has immense power to do immense good. Everyone wants to feel liked, valued and included.”

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“This is our normal or baseline…it may be new or unusual to you but we are living it.”

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“I am incredibly grateful for all the Jewish and non-Jewish organizations, schools and funders that provide the extra support and accommodations that enable my child to go to camp and participate fully in Jewish education, extra-curricular activities, community programs and school. And at the same time, sometimes I am so tired of being grateful for things for which other families and kids do as a matter of course.”

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“Our children are our children with hopes and dreams like other children. Reach out and connect with them directly. Look them in the eyes.”

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“Build a friendship. Find out what they like to do. Talk to them directly. Include them as you would anyone else.”

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Normalize disability.

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Don’t assume they cannot do things. Assume they can do lots of things.

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My child has feelings just like everyone else, don’t talk about them in front of them.”

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“Invite us over. Don’t expect us to always do the inviting and the entertaining.”

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“Don’t ask me what’s wrong with my child.”

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Don’t ask me when my child is two years old, ‘What are they going to be able to do?’ My response will be, ‘Did your mother know what you were going to do at two?’”

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“Please don’t talk to others behind our backs about ‘our situation.’”

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“Don’t tell me ‘G-d only will give you what you can handle.’”

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“Don’t send me a copy of Going to Holland.”

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“As a parent of multiple children with disabilities and mental health conditions for the past two decades it’s astonishing how little is actively being done in the Twin Cities compared to other Jewish communities around the country – both individually and collectively. Every individual and Jewish institution can do much more to normalize disability and to create places where everyone feels like they belong.”

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As a person with invisible disabilities:

• If I tell you I need help, believe me.
• If I tell you I can’t meet in the afternoon, trust me.
• If I tell you I can only meet for an hour, respect that boundary.
• If I tell you I am isolated, ask me out for coffee.
• If I tell you that I can’t go out in winter because I am a fall risk, offer to pick me up and get me out of the house.”

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“Whatever your belief about divine powers and how the world works, please don’t tell me that G-d or the world gave us our ‘special’ child because we could handle it. We handle it because our child is the child we have. That is how things turned out for us. What other choice is there? If it happened to you, you would handle it too.”

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“It can be hard to accept invitations even when they are given. For several years when my child was young, we could not even attend family gatherings because it was just too overwhelming for my child to be in a busy, loud, chaotic environment. It wasn’t that we did not want to do so, it was just too hard. When we tried, all our time and attention would be focused on keeping our child calm. We would be stressed-out; our child would be stressed-out and we would not even get to spend time with family and friends. Which of course, defeated the purpose…. So we did not accept invitations and when we declined, the inviters would often say, so kindly, “it’s okay, we don’t mind.” And I was grateful, but we still could not accept. Because it actually was not about them. It was about us and what we could handle. So please do invite and include us. But please also understand that sometimes we will not be able to accept the invitation, not because we don’t trust you, but because it’s just too hard for us.”

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“I get tired of the inspiring, uplifting personal interest stories of people and families with disabilities that appear in the media. I know they are real people and real stories, but it’s not all like that. We are not all magically good or better people for going through this. We grieve for the child we hoped to have. We get angry. We get overwhelmed. Having a child with a disability has cost me much in terms of my mental and physical health and my relationships with my family, my friends and my spouse. There is so much extra work and planning. There is so much more worrying about the future. There is so much time spent advocating. There is so much loneliness. There is so much bearing the looks and stares from other kids and grown-ups and saying nothing, but having your heart and insides break. Don’t get me wrong. There is of course joy and laughs and awe too. But there lots and lots of hard stuff that we never wanted.”

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“I worry regularly about my son running out of cute. Much odd, unexpected and inappropriate behavior can be forgiven and dismissed by being young and cute. But cute has a time limit. And we are rapidly approaching it. I worry for him – for the day he will suddenly be confronted with intolerance, condemnation, teasing and perhaps bullying for behaviors he has engaged in for years. And he will be confused and not understand. I worry that when he runs out of cute, some of his actions could lead to someone calling law enforcement, and pray that, if that happens, the officers will have the insight to notice that he is a person with special needs and interpret his actions accordingly. And I worry for me – because I will feel stung by the intolerance and condemnations too. And, while it is unfair and I won’t want to do so, I worry that it may make me less tolerant of him.”

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“We are like everyone else.”

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“We are people too.”

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“I want people to accept me for who I am.”

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“ I am a person first.”

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“Please do not judge people with disabilities.”

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“Be nicer to people with disabilities.”

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“We like to be out in the community every day doing things. (this is not a special ‘outing’)”

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“We do not want others to feel sorry for us.”

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“We do not like to be patted on the head.”

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“Don’t ever say, are you racing in your wheelchair.”

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“ I am a people person and it has been tough.”

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“I was teased all the time for a very pronounced stutter. It wasn’t nice. I would come home crying every night. My folks could not do anything about it.”

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“I’m the parent of a young child with an invisible disability. Our kids deserve to be included in Jewish preschools, Hebrew schools, camps and youth groups. There are small pockets where our community rallies and does well to support these children and families, but by and large we make it incredibly difficult for them to participate and feel comfortable. We use language like, ‘Your child shouldn’t be here if they have a special need,’ when in fact, they love being Jewish and deserve those opportunities and experiences just as much as everybody. If anything, these parents and children need the community more for morale and spiritual support than anyone. We should all take this opportunity to think about the friends, classmates, peers and colleagues in our lives who have a family member with a disability and reach out to include them, for a play date, Shabbat, a coffee date to show them we care. That we see them. That we love them and are here for them, because as Jews we follow teachings like this from Pirke Avot, ‘Do not separate yourself from the community.’ Accordingly, we must prevent anyone from being separated against their will.”