A Special Father’s Day Message

By Joshua Weitzman, Executive Director, Alpha Resource Center of Santa Barbara and father of Hannah

Sixteen years ago, my wife and I sat in a hospital room with our four-day-old daughter, Hannah. Hannah has Down syndrome. We’d gone home from the maternity ward only to end up back in the children’s wing via a panicked trip to the emergency room the next day. 

Through a series of events, we learned that Hannah was not getting nutrients into her little body. This was primarily a result of her low muscle tone, and it was exasperated by our lack of knowledge as her parents about Down syndrome. We had gone through various emotions that week, spanning the range from joy to disorientation to fear. However, at that moment, the feeling that stood out was loneliness. 

Thankfully, it was later that day that the local Arc Chapter, Alpha Resource Center of Santa Barbara, reached out to us. They came to visit us in our hospital room where they shared valuable information and let us know we we’re not alone. From that moment our learning curve was steep as we began to understand our new world. 

Over the next several years my role grew from father to board member to Executive Director. During that time, I discovered there was an even larger community of families like mine. Not only did Arc Chapters exist throughout the state, the Arc of California, of whom many of those local chapters are members, was working on behalf of us all to ensure everything from funding for the vital services we’d received for Hannah to protections for those with intellectual and developmental disabilities (IDD) through new legislation, all while connecting families and organizations throughout the state.

We couldn’t have done it alone. I couldn’t be the father Hannah needs on my own. I’ve learned from the fathers who came before me. I watched firsthand as fathers advocated for their children’s individual needs. I heard the stories of generations of fathers lending their voices to the cause, inciting change at the state level. This Father’s Day, I’d invite other fathers to join the effort. We are making a difference.

Whether life has recently brought you into the IDD community, you’re a longtime family member of an individual with IDD, or perhaps a community member that understands the importance of inclusion and opportunity for those with an IDD, there’s local and state levels of involvement and resources that can allow you to make an impact, too. 

My family will forever be grateful for the work of the Arc of California and local Arc Chapters in every community. While I never imagined this path for my life or family, I wouldn’t change it for the world. It’s led me into relationship with some of the most amazing people I know – and at the top of that list is Hannah.


October is National Down Syndrome Awareness Month

To kick off National Down Syndrome Awareness Month, Nicole Adler has taped an inspiring message that she hopes will shift people’s perceptions about having Down syndrome.  Nicole is a motivational speaker, equal rights advocate and a Governor appointed Councilmember for the State Council on Developmental Disabilities.  

“I don’t want my medical condition to define who I am as a person,” Nicole said. “I am just like you! I am human. I have feelings.  I have emotions.  I want to love and be loved.  I want to feel valued, accepted and included in my community.”

Trisomy 21, also called Down syndrome, is a condition in which a person is born with an extra chromosome.  Nicole believes that our identity should not be hinged on our medical condition. “When you introduce yourself to someone, do you typically tell people your medical history?” Nicole added. “There is diversity in every part of our existence…from plants to animals. There are no two people alike.  It’s our uniqueness that is beautiful and should be celebrated.”

Researchers estimated that in about 1 out of every 1,200 people (children, teens, and adults) living in the United States had Down syndrome, or more than 400,000 nationally.

We applaud Nicole’s perspective on shifting the narrative for people with Down syndrome, and seeing each person for who they are, and prioritizing diversity in our classrooms, neighborhoods, and workplaces.

For NDSM, we encourage you to share your perspective, and continue the dialogue to educate and increase awareness for people with Down syndrome.

WATCH VIDEO: https://specialspeakernicole.com/media 

People with Developmental Disabilities Make Great Employees

Joshua said it was hard to get a job at first because he wasn’t given a chance to prove himself.  Once he was hired, his co-workers valued his contribution.  According to the US Census Bureau, only 19% of working age adults with developmental disabilities are employed. The majority of those employed are working only part-time or earning sub-minimum wage, leading to a disproportionate number of people with disabilities living in poverty and seclusion from their community. For those who are non-disabled, the employment rate is 64%.

For National Disabilities Employment Awareness Month (NDEAM) we want to raise awareness about the many benefits of creating an inclusive and diverse workplace.

Research conducted by the Job Accommodation Network (JAN) reveals that the majority of workplace accommodations cost nothing to make, which is the most common concern expresses by businesses.

A recent article in Forbes noted the following “Seven reasons why hiring people with disabilities is good for business:

  • Improves the overall bottom line
  • Reduced turnover rate
  • Discover untapped potential
  • Improve company culture
  • Expands consumer markets
  • Financial incentives
  • Meets government requirements

People with disabilities contribute to an organization’s success by bringing unique perspectives and experiences to the workplace.

Joshua’s employment success is featured in a series of personal stories by The Arc of the United States. There are many ways to get on a path to employment through training and placement agencies.  Contact your local regional center or Arc affiliate to learn more about how you can access employment training and placement services in your area, or to make your business more diverse and inclusive.

WATCH VIDEO: https://youtu.be/ElylSTb3OxY 

Spotlight on Disability Culture: Drag Syndrome

Drag Syndrome creates the fabulous world that I want to live in. A fully inclusive, joyful, and extremely sparkly world where we are each celebrated exactly as we are.

As their name suggests, Drag Syndrome is a troop of drag performers with Down syndrome. They had been planning a world tour before the global shutdown, but for now are entertaining the world through their Instagram account and on their website.

This short BBC video about their work is – as the kids say – giving me life: