[Part 1] A Conversation with Jon: Redefining Disability and Creating Hope

jonThis year, Easterseals celebrates 100 years of service to community members living with disabilities or special needs, including military families. Over the last century, Easterseals has evolved from serving only children with disabilities (where we started as the National Society for Crippled Children). We now support all children with high-quality early childhood education and intervention, provide medical and social day care services for adults with disabilities, work with veterans and individuals with special needs to secure meaningful employment, offer respite relief to family caregivers, including those in the military, and give veterans and military families a safe place to come for mental health services regardless of their ability to pay.

In essence, Easterseals has become an irreplaceable resource for our community.

Last year, Easterseals unveiled a new logo and a revitalized brand. The rebrand reflects the evolution of disability in the 21st century—going beyond the physical to include invisible, emotional, social and educational challenges. The new brand addresses these important shifts by bringing clarity to the crucial services Easterseals provides across the lifespan.

As we reflect on what milestones we want to set for the next 100 years, I would like to share some insights on how that journey might unfold. I’ve asked our Communications department to help compile some questions that might be of interest to our community. And I hope my answers will reveal why Easterseals staff and I are passionate about the work we do.

In this three-part interview blog series, I’ll share my thoughts about the meaning behind Easterseals’ definition of disability and hope. I will also talk about why veterans are an important part of the Easterseals community. And lastly, I will touch on why inclusion is important to society and how we plan to innovate to stay relevant to our communities and help those who most need Easterseals services.

For this blog, I will focus on why we want to redefine the definition of disability and why creating hope is such a powerful idea.

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Q: Easterseals wants to change the way the world defines disability. How does Easterseals define it?

What I often see is that people see another’s disability before they see the person and the abilities that person has. I often talk to my friend and board member Juliette Rizzo, who is highly educated and a former Ms. Wheelchair of America. She shared the difficulty she experienced when she was looking for a job. Even with a great educational background, she felt people could not look past her wheelchair when she was pursuing job opportunities.

Watch Juliette Rizzo discuss why she supports people with disabilities.

I think we have the opportunity to change that perspective and get people to see the person and their abilities, and not only the disability. We, at Easterseals, believe that the key to changing mindsets begin with childhood, which is why we focus on early education and inclusive environments where typically developing children are exposed to others with disabilities and special needs. They are observing that even though their friend might need help with something, there are actually lots of things he/she can do, including being a good friend. Starting really young is a very important step.

Today, supporting people with disabilities is more about empowerment and helping them achieve what they want to achieve. For example, in our medical adult day care centers, we practice person-centered care. This means NOT saying, WE know what is best for YOU, but rather we take the time to learn about each individual’s interests and goals, then we work with that individual to provide activities aligned with his/her interests or goals.

We also apply this person-centered approach when working with people in our employment programs. The Veteran Staffing Network and Easterseals Disability Staffing Network help individuals consider their experience, skills and interests, and then we ask: what do you want to do? What do you want to achieve? How can we help you reach that goal? I think it really boils down to one of our core values—respect.

Q: Part of Easterseals’ vision is to create a hopeful community where people can achieve their potential and live meaningful lives. Why is that important?

To me, it really ties back to the way people are defined by their disabilities and working to change that. What creates hope is when we can help people realize their potential and when we can make families feel their loved ones are getting the support they need. Creating hope for society makes for a better world to live in.

Marti and family at Bright Stars
Marti and her family at Bright Stars Night at the Circus.

A good example of this is with one of our ambassadors, who came to us as a young child with Down syndrome. When she first came to our child development center, her parents really did not have a lot of hope. Last year, I was reflecting with her mom and she was saying when Marti was born, she recalls all the doctors telling her doom and gloom scenarios – that her daughter wouldn’t be able to do this or that. Then she came to Easterseals and it was the first time she felt hope for what her daughter COULD DO. Now her daughter is in college.

Creating hope for our participants is also important because it helps them believe in themselves and the things they want to achieve. That’s how it should be for everyone.

Q: What does hope look like for our Adult Day Services clients, many of whom have dementia or Alzheimer’s disease?

Many of our participants with Alzheimer’s disease are not usually aware of what is happening around them. In those cases, we are not only providing a safe, caring environment for them, but also giving their caregivers hope and support. Statistics show that caregivers of Alzheimer’s patients tend to have higher rates of Alzheimer’s disease diagnoses themselves, and have higher mortality rates. Caring for a person with dementia or Alzheimer’s disease is extremely demanding, and for many caretakers it can feel all-consuming. Allowing us to help them care for their loved ones, allows them to care for themselves a bit.

For all of our participants, we provide them with a safe, warm and welcoming environment that they look forward to coming to. And we found that when participants feel joyful, amazing things can happen.

We had a participant name Beth, who came to us while she was already a part of the Montgomery County hospice program. Her husband Roy told us she was expected to live for less than 6 months. Her family chose Easterseals because they didn’t want to put her in a nursing home. They wanted to care for her at home in the evenings, but needed some kind of support during the day. They were really looking for a partner in care.

Hanna with Beth's painting
Beth’s granddaughter, Hanna, poses with her painting.

The amazing part about Beth’s story is that there was a phase in which she couldn’t speak, but she still wanted to participate in activities. Beth really loved art, especially painting. When her daughter was pregnant with her first child, Beth painted a picture  that everyone was convinced was a picture of a baby in a womb. She showed through her painting that even though she couldn’t speak, she knew what was going on. Beth actually ended up living for about 2 years—way beyond what was expected. That’s the power HOPE can have on individuals.

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More of “A Conversation with Jon” will be available in our March blog post where we will talk about why veterans are an important part of our community. For more information about Easterseals life-changing programs for children, adults, veterans and military families, please go to our website at www.eseal.org.

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