Will You Love My Son?

Rabbi Ilana GarberBy: Rabbi Ilana C. Garber

I suppose it’s every mother’s dream and nightmare all tied together in one shiny package: that one day someone might love her son (insert “daughter” here if it applies!) enough to capture his heart. We worry that our son might return this person’s affections, loving us a bit less, or a bit differently. We worry that one day our son might leave us for this other person (though we try to remind ourselves that God intended it to be so….the Torah says a man should leave his father and his mother and cleave to his partner). And of course we worry that our son might fall in love only to have his heart broken, and we pray that we might be there one day to pick up the pieces.

But for our children with disabilities the story will probably not be the same. I doubt my son (while only 3 right now) with Fragile X Syndrome will ever get married, though he will probably have crushes, his heart breaking when he doesn’t understand why his feelings aren’t returned. And while he is adorable (objectively, it’s true!) and very lovable, and all of his teachers and therapists tell me how much they love him, I still wonder, and worry, and stress about you, the stranger in this world. Will you love my son with disabilities when you meet him?

Because I struggle to love yours.

Just last week, a new person entered our synagogue. He was a young man in the community, someone I’ve seen around over the years. I don’t know his name. I don’t know his story. I could have asked before, but until this time, I hadn’t. What changed for me was the text my friend sent when the young man entered our morning minyan (daily quorum): weird guy here again.

I rushed into the minyan. Weird guy? Was there someone harmful? Disruptive? No. Here was a young man, struggling to find his place in the siddur (prayer book) and in our service, smiling at everyone (smiling a bit much, perhaps), but completely harmless and completely not “weird.” Not weird! In fact, he reminded me so much of my son that I made it a point to help him find the page, and I asked his name and told him I hope I’ll see him again.

Rabbi Garber and son

I wanted to cry. Why had it taken me so long to reach out? What was I afraid of? And what had scared my friend so much that he had labeled this young man as “weird” and left it at that?

When will my son go from being cute and loveable to weird and scary? I’ll always love him, of course. But will you?

Inclusion goes beyond how we welcome those with disabilities into our religious schools or day schools or how we make synagogue services more inviting. Inclusion starts with our attitudes. Only when we can love each person (with or without disabilities) because he or she is someone’s child – only then will we truly be an inclusive community.

I feel (mostly) confident that my son is being raised in an environment where he will know he is loved and respected and included. I hope I can say the same for your children. And I hope when your children come to visit me, they will feel welcomed and loved. And I hope, when you meet him, that you will love my son.

Rabbi Ilana C. Garber lives in West Hartford, CT and is the associate rabbi at Beth El Temple. She lives with her husband and 2 sons, one who has Fragile X Syndrome. Follow Ilana on Twitter and learn more about inclusion and #WhatRabbisDo.

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Architectural Barriers

Credit: Mike Lovett

Credit: Mike Lovett

By: Jennifer L. Lee

As a Ruderman Social Justice in Disability Scholar, I had the amazing opportunity of interning last summer with Stavros Center for Independent Living in Springfield Massachusetts. As an individual with a disability and an advocate for disability rights, my internship placement at Stavros was a perfect fit. As an organization, Stavros provides a multitude of services to fit the needs of an individual despite their age or disability.

One of the services they offer is assessing architectural barriers within residential facilities, businesses and the community within the Pioneer Valley area. During the summer, I worked alongside Stavros’s Access Specialist, Andy Bristol and as an Access Specialist Intern, I helped to address access disparities for people with disabilities. I was given the opportunity to address access issues in many public places including hotels, newly renovated facilities and locations nominated for the 2014 Access Awards. The Access Awards is an annual awards luncheon that works to honor people and businesses that work to create an accessible environment for people with disabilities. 2014 Access Award nominees are nominated by recipients of Stavros services and members of the Pioneer Valley community. I assisted with the visiting, evaluating and compiling detailed notes for all 2014 Access Award nominees.

Jennifer Lee speaks about her experiences interning at Stavros. In this picture she is presented a 2014 Access Award. This picture was taken at the event by Nancy Bazanchuk of CHD, Disability Resource Program, Springfield MA

Jennifer Lee speaks about her experiences interning at Stavros. In this picture she is presented a 2014 Access Award. This picture was taken at the event by Nancy Bazanchuk of CHD, Disability Resource Program, Springfield MA

In addition to preparing for the 2014 Access Awards, I also assisted and co-facilitated the Disability Action Network meetings. These meetings work to bring advocates and members of the disability community together to discuss access issues within their community and surrounding areas. These meetings strive to provide insight, supports and resources necessary for improving access.

I also had the liberty of completing independent projects such as creating the first Handicap Parking Application for the Ludlow Council on Disability, creating a compiled list of tax incentives and deductions for small businesses that comply with the Americans with Disabilities Act (ADA) standards and Architectural Access Board (AAB) standards. Moreover, this internship experience allowed me to become more knowledgeable about access issues within my community and beyond. Even after my internship, I continue to advocate for equal access for people with disabilities. My hope is to apply what I have learned this summer to create a list of recommendations for improving accessibility on the Brandies campus.

Despite Stavros’s mission, the help of advocates and the efforts of people with disabilities, people with disabilities continue to face architectural barriers within their communities. This is a huge issue for people with disabilities because it reinforces community isolation and limits their ability to work, socialize and live productive, independent lives. Even after the 25th anniversary of the ADA advocates such as myself, organizations such as Stavros and other disability-centered organizations continue to have to promote the inclusion of people with disabilities within their communities. My internship experience made it crystal clear that community inclusion of people with disabilities cannot be adequately achieved without addressing the architectural boundaries that hinder access for people with disabilities in everyday life.

Jennifer Lee is a current 2015 Ruderman Social Justice in Disability Scholar at Brandeis University. She is obtaining a double major in Health, Science, Society and Policy (HSSP) and American Studies (AMST). As an individual with a disability and a disability rights advocate she hopes to use her degrees to promote inclusion, equality and equal access for people with disabilities. 

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A Safe Place

Benay JosselsonBy: Benay Josselson

Last weekend, my family and I drove up from our home in Rockland County, New York to Palmer, Massachusetts to participate in Ramah New England’s Fall 2014 Tikvah Family Shabbaton (Sabbath weekend). As parents, we are constantly thinking about what we can do to help R, our 7 year old, who has a diagnosis on the autism spectrum, and B, our 4 year old, a neurotypical preschooler. Although we know that parental self-care is important, our daily routines interfere and what we can do to help ourselves is often an afterthought.

The Shabbaton was completely different. The way in which our family generally functioned on a day to day basis was turned upside down for a precious 48 hours.

With every activity, service and meal, the amazing and capable tzevet (staff) who interacted with our family was warm, caring and supportive of all our needs – children and parents alike. I found that I was not worrying about R – and more importantly, not waiting for the proverbial “other shoe” to drop. I attended services, I had an aliyah (called to the Torah), I participated in interesting lectures. I had time and space to socialize with other parents of children with disabilities. We shared our experiences, empathized with one another and also did a lot of laughing. We came from several different states, but we spoke the same language.

Camp Ramah Shabbaton

As a parent, particularly a parent of a child with disabilities, there is immeasurable value in having a weekend free of judgment. And that is exactly what we got at the Shabbaton. The parents and tzevet at the Shabbaton understood our family in a way that most people at home cannot comprehend. When R had a meltdown, I did not worry that parents, children and staff were staring. I did not panic. I did not apologize to everyone who had witnessed it. But more than that – I did not feel I had to.

At the end of the Shabbaton, I was struggling to put into words the way the weekend made me feel. I started to tear up saying goodbye to Amanda, the counselor assigned to our family for the weekend. I tried to explain the difference she and her friends had made for our family that weekend, and how much it meant to find a community of young people who are eager to include children with disabilities in the Ramah community in a meaningful way.

Still, it was not until we were driving away from camp, with R crying in the backseat, that the value of the weekend fully came through. As a child in an inclusion setting both in his Jewish day school and his summers at Camp Ramah Nyack, R is just beginning to understand that he has some difficulties that his peers do not. As R cried, he explained that being at camp was “safe”, “comfortable” and “easier” than what he was going back to.

This made me cry again too. I really “got” what he meant. This was how I was feeling too. When we decided to come to the Shabbaton, it was something we were doing for R. Little did I know that the Shabbaton would be just as valuable for me as it was for him.

Benay Josselson is an attorney who lives in New City, New York with her husband and two children. Benay is a contributing blogger for Matan’s monthly blog series called “A Parent’s Perspective.” The Tikvah Family Shabbaton is cosponsored by Camp Ramah in New England and Reshet Ramah: Alumni and Community Engagement Network.

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Timeless Lessons

Sam GelfandBy: Sam Gelfand

The school year recently started. Although school is all about learning and growing (and lots of homework), students (like me) often have a different perspective. School can be tedious, homework is never ending, and some teachers can be taskmasters. Despite what can be seen as an overwhelmingly negative experience, there are some people that make school worthwhile. I’d like to tell you about one of those people.

Mr. Sal is a little bit different. Luckily, so am I.

Eric J. Salomonsson was born sometime in the 1960’s, although he really should’ve grown up in the 1930’s. He listens to big band music in class, hates computers with a passion (for some reason one of the school higher-ups decided it would be a good idea to give him a MacBook for class; it’s been rather entertaining watching him attempt to use it), and has a passion for classic American cars. Perhaps the most impressive sign that he needs a Delorean time machine is his “stuff collection” that lines his classroom. A world map from the late 1930’s is pinned to the back wall, hubcaps from 1950’s Corvettes and Impalas are mounted next to the clock, relics like Coca-Cola cans made from tin and antique matchbooks sit on shelves, and the rest of the room is lined with posters from old TV shows and movies.

Just as important to him as time is place. A native of Worcester, MA, his room has pictures of downtown Worcester and an old Red Sox flier featuring Carl Yastrzemski. Even more impressive is his devotion to his Swedish heritage. He legally changed his last name from the Americanized Salom to the original Swedish spelling of Salomonsson. He is fluent in both Swedish and German. When his two passions combine, he is a renowned expert; he has written several books and theses about the Swedish population of Worcester.

Mr. Sal and I are very much alike. We are both overwhelmingly sarcastic, we love cars, we’re fascinated by history, and our lives are dominated by our particular obsessions. It’s no wonder, then, that we connected almost instantly.

Sam Gelfand and Mr. Sal

I’ve never had a teacher that has understood me like Mr. Sal has. He understands that I learn differently, and that although I may be sketching during his lectures, I’m paying more attention than the person next to me. He understands that I excel at creative projects and have difficulty with homework, and will give extensions and extra credit as such. He puts up with (and occasionally enjoys) my various in-class antics, such as accidentally starting a cult in his classroom last year (it’s a long story). Just as importantly, I understand how Mr. Sal thinks and teaches; taking notes is a breeze (when I do take notes) because I can finish his sentences for him.

All students, regardless of having disabilities, should be able to connect with a teacher like I have at least once. To someone with disabilities, such as myself, our student-teacher relationship is invaluable. Mr. Sal has taught me history for the past three years, but he taught me something you can’t put in a lesson plan: to be accepting of others and not to judge a book by its cover (especially when it’s reading one in the middle of your class).

Sam Gelfand is 17 years old and was diagnosed as being on the autism spectrum when he was just three. Since then, he has worked through many therapies and programs to make his diagnosis as transparent as possible and to better manage life in a complicated world.

At 12, for his Bar Mitzvah project, he started a campaign to speak about Asperger’s awareness; since then, he has become a sought-after speaker with a national tour. He speaks to faculties, students, corporations, religious and community organizations, and is the South Florida Youth Ambassador for Autism Speaks. 

Sam is a student at The North Broward Preparatory School in Coconut Creek, Florida, where he is a member of the Debate Team, Chief Sports Editor of the school newspaper, and announcer for the Varsity Baseball and Football teams and the South Florida Collegiate Baseball League. He enjoys writing comedy, drawing and playing the drums.

Sam aims to attend college to study Broadcast Journalism.

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A Nifty Chart

Yes.

Words can hurt
This originally appeared in the Huffington Post. It says it all- certain words hurt. We can all work to find other words to express ourselves.

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Homecoming

Jo Ann SimonsBy:  Jo Ann Simons

If it were not for Facebook, I would not be aware that Homecoming Kings and Queens are now synonymous with disability. Almost every day this high school football season, I have learned that another school is being lauded in social media, print and in broadcast for picking a king, queen and often both with a disability.

I wanted to know how widespread this practice has become- using Homecoming as a way to recognize students with disabilities. So i did a web search and let me tell you- it is happening.

These are feel good stories with smiling crowned faces and proud families. I know I would be pleased and proud if it were my child but it also makes me wonder if it is really inclusion. Do these moments propel our movement towards full acceptance, access to higher education and job opportunities for people with disabilities?

Is it happening for the right reasons or have typical kids decided they no longer hold on to becoming Homecoming King or Queen as a valued goal? Is it something to put on your college application? Does it matter? Is the status that was previously associated with this honor no longer relevant so it has been handed off to students with disabilities?

I don’t know the answer.

Full Disclosure-I went to a high school that did not have Homecoming or Homecoming King or Queen. We did have a winning football team and after we left for college, we came home for Thanksgiving and went to the football game- that was our homecoming. No crowns. No Homecoming Court and certainly no Kings and Queens. Only freezing outside in the New England weather to watch the game and gathering during the weekend at “The Spirit of 76″or “Maddie’s Sail Loft” (ok- there was a bar and alcohol involved but, it was during the brief period in the 1970’s when the drinking age was 18).

I never really understood the whole ritual of Homecoming pageantry.   Must be a regional thing because it’s not honored or celebrated in New England like it is in the rest of the county. I still don’t get what the criteria is besides winning a vote by students.

Mass Advocates Standing Strong logoSo forgive me if I don’t embrace this concept fully because I prefer to tell you about what I witnessed two weeks ago. In a hotel in Massachusetts, the self-advocacy organization, Mass Advocates Standing Strong, welcomed 450 self-advocates to a conference planned and conducted by self-advocates for self-advocates. There was a little organized chaos at registration- every oversubscribed conference I have ever attended looks this way. There were no kings or queens but the recognition that people with disabilities have a voice in their lives and in their community and work to support people with disabilities to do so.

When my son was born, over 30 years ago, I did not expect I would be driving him to such a conference. I didn’t know that he was to become an advocate with a voice. The conference was filled with workshops that were going to assist him in dealing with bullying, making informed voting choices and being safe.

Every month they are in our State House expressing their support of bills that will protect people with disabilities, making sure they are afforded the same rights and privileges.

Among the 450 people, there were no kings or queens but, there was a hotel filled with strong, self-confident and educated people.

And I was proud for all the right reasons.

Jo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers.

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Is The Disability Real If It’s Not Physical?

Benjamin A. WinnickBy: Benjamin A. Winnick

This is the second post in a series entitled “Issues I face as a working adult with a disability.” Read the first post: To Disclose or Not to Disclose a Disability?

How do you explain to others that a disability is real when it is not physical?

It is really hard. It is easy to understand that accommodations are needed when someone has a physical disability. Society has come to accept that a physically disabled adult has limitations but also real competencies. My challenges are harder for people to understand because they are invisible. I don’t need a wheelchair or ramp, I don’t need a seeing-eye dog, I don’t need hearing aids; but I do need other types of accommodations that are more subtle and I need understanding when my social interactions don’t always mesh with accepted behavior. It is a constant struggle for me to monitor my behavior and control my impulses in order to live a successful independent life. Since my disability is subtle it is much harder for the general public to appreciate my abilities and it is hard for me to find a social niche where I am comfortable and accepted.

I have a non-verbal learning disorder diagnosis – so, what does that mean? It is a gray area and similar to Asperger’s syndrome…but most people don’t “get it.” When I first meet people they may not appreciate that I struggle in social situations and sometimes they may think that I act inappropriately.

At work I might be perceived as not capable, but if I have the right type of work, environment and supervision I can be very successful. If people don’t give me a chance and if I don’t have the accommodations that help me, I may appear either stupid or lazy; in reality I am neither and it is upsetting when I am treated as such.

Disclose a disability

Benjamin (right) and his fellow Transitions to Work graduates (credit: JVS staff)

My current job is a good fit; but it took quite some time for me to learn how to complete the expected tasks to my supervisor’s satisfaction, and the same amount of time for him to learn how to assign and supervise my work to allow me to succeed. He didn’t initially understand that I am easily distracted and disorganized – not because I wasn’t trying, but because I just couldn’t process too many instructions and responsibilities at one time and I have trouble staying on task. I was lucky to have a job coach from Jewish Vocation Services who helped explain my needs and issues to my boss and to help explain my boss’ issues to me. I am also lucky that my co-workers were willing to learn and adapt the work environment which helps me complete my assignments.

We now have a great working relationship and everyone I work with understands that I need very structured and limited work assignments. Every day I get a specific list of tasks that I am expected to accomplish…and I can do it! I am happy we have figured out how to make it work. I need to give a huge amount of effort and concentration to make it work and that is exhausting but I am grateful for the opportunity.

Ben Winnick is 32 years old and grew up in Needham, MA. He currently lives in Brighton, MA and works in the commercial kitchen at Newbridge on the Charles, an assisted living and skilled nursing facility in Dedham, MA. Ben loves animals and especially his family labradoodle, Kasey. The Ruderman Family Foundation is a proud partner in the Transitions to Work Program.

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