Feature Issue on Loneliness and People with Intellectual, Developmental, and Other Disabilities

I’ve lived in Brooklyn my whole life – 30 years now – sharing a home with my parents and sister. Despite having people around, loneliness has always been with me on my journey.

Many people with disabilities are connected to places they go to receive supports and services, but how we can connect to the community in general, outside of agencies, is the question.

We also have to redefine what a social life is for many people with disabilities. Many people my age go out to bars and movies. For people who have social issues, like me, it can take time to find their place, especially in new or loud environments. It takes time for me to discover trust, compassion, and understanding. I am not one to connect with someone first, but I can for sure read your energy and see how much I can share with you.

As someone with cerebral palsy, I jump to loud sounds or talking, so I don’t go to the movies. Going places with loud sounds can be challenging as well, so I often stay in a corner. People who can’t hear me speak have considered me antisocial, but that’s not true. I enjoy connections and being involved.

Loneliness is a huge problem, especially when you have to reach out to places you want to go and ask if they serve people with disabilities. We can go to restaurants, but we often still have to call ahead and ask if they can accommodate a wheelchair. I’d love to join a gym, but will there be people there to support me? The lack of meaningful inclusion and disability awareness chips away at authentic connections. If someone doesn’t know about disability, how can we feel safe and like we belong in those spaces? We first have to get rid of the stigma toward people with disabilities and promote awareness about inclusion so it’s not just a specialty of one particular group or place, but something for everyone.

Loneliness also affects the family dynamics of those with disabilities. We often are not able to go to family homes or events because they are not accessible for my wheelchair.

The families of those with disabilities are often challenged by behavior or needs others may not be able to accommodate. I’m a very picky eater, for example, and I often ask if they will have my favorite foods. That is a challenge as well.

When I was a teenager, I felt invisible. I thought, “How can my wheelchair be so big, but so small?” People misunderstood me, so I started sharing my story to get people to understand what I was trying to navigate. At 16, I created my own website, and writing daily blogs has allowed me to connect and has allowed people to get to know me and be part of my journey.

To distract me from my loneliness, I go shopping and go to restaurants. When the weather is good, I connect with friends and say, “Let’s go bowling, to museums, or arcades.” Have you ever asked yourself what other activities people with disabilities can take part in and be surrounded by people?

I do plan outings with my direct support staff, who I hire through my self-directed services program. They also play the roles of mentor and friend. For some, they are a family figure. Growing up, I wanted to be a part of the Big Brothers Big Sisters program, but my parents’ mindset was that I already have siblings. Still, I wanted to have someone as a peer mentor and friend in my life. It felt so important to separate the roles. Going to college also helped me grow socially and build engagement with others.

All of these activities reduce my loneliness to a point, but a lot of things are still the same. There should be more natural support, but I often wonder if my friends without disabilities would be willing to work around the time when I have supports, knowing they’re already living their own busy lives.

Most of the self-advocacy trainings I do are online, and that gives me the chance to connect with others without dealing with accessibility or transportation issues, but sometimes I just need to get away from the computer and get some sun. I make bracelets and have joined some pop-up jewelry shops as a way of engaging with people informally.

But motivational speaking is where I get to use my voice, travel, connect, and network. Community events, panel opportunities, and developing events within my nonprofit organization, Disability Champions Mentoring Network Inc. (http://www.disabilitychampionsmentoringnetwork.org/), helps to build community. This all started by me giving a keynote speech for a transition conference and sharing about my idea and starting a mentoring program.

A few years ago, the Network was making an “In Their Own Voices” video about my life, and as part of that process someone who is a support said she also considers me a friend. That was so important to me.

Growing up in a culture of “what happens in the home stays in the home,” my parents and siblings were my only support system. A few years ago, I developed a full team for my supported decision-making agreement. It includes people who can support me in goals for education, medical decisions, friendships/relationships, community activities and advocacy. Having a system has allowed me to speak up for myself and advocate for my needs in ways I never did before. When I was struggling after taking time off from college and feeling like a failure, they helped me return and graduate with an associate’s degree.

After speaking only a few words to a few people as a child, my godmother inspired me to express myself, and she helped me find my voice as a motivational speaker. My high school paraprofessional took time to understand my struggles, too, and is still part of my life today. She saw me when I felt invisible and voiceless in the system as I planned my future, and she developed a safe space for me. As I continue to navigate my own journey by working toward a certificate in event planning, I aim to develop safer, inclusive environments. Through inclusion, we combat loneliness.

Today, many of my supporters and mentors will reach out and ask to plan lunches or dinners. They are open to communicating however I want, which allows me to show up on good days and bad days.

As I’ve grown in my advocacy, I think I’ve changed some perspectives in my family and community, not only on disability but on life as well. Sharing my passion makes them understand how I see the world today as an adult, and it may be different from their view. I hope they see exclusion is everyone’s problem, and so is loneliness.