Building Connections on Disability: How Friendships Work for People with RTD

While many people don’t know what RTD is, there are many ways to foster and maintain relationships among those with and without the disorder. The purpose of this article is to explain the importance of forming meaningful connections with individuals with and without RTD by bringing everyone together to increase awareness of disability rights and inclusion.

No matter how RTD has impacted my life, I am generally a believer in equity and justice. But the question people ask is, “does it matter how many friends a person with a disability can have in a lifetime?” A simple way to answer is “no” because everyone has our own sense of who we are as human selves. Family and friendships are important ways to keep us happy, healthy, and balanced over time.

I must point out that some people with disabilities, especially those with severe autism and developmental disabilities, may find it difficult to interact socially with external sources, which results in fewer close friendships and prolonged isolation as they mature into adulthood. For those with RTD, the situation is a lot milder. Some benefit from groups like Best Buddies and other programs that focus on bringing people with special needs together with peers. The biggest thing I can remember is how lucky I was when I made lots of great friends in school due to the support, I was given to participate in extracurricular activities outside of the classroom. Although I was fortunate that these sorts of programs exist in my public school system, I still faced challenges even in these activities. For instance, sometimes people didn’t understand my speech completely or the activities focused more on those with cognitive challenges than physical, therefore activities were sometimes not accessible to me. There are programs exclusively for people with intellectual disabilities that doesn’t present much benefit to me.  Another factor contributing to my obstacles includes my visual/auditory impairment. I have learned to overcome these by being able to lipread and use residual hearing through a cochlear implant at the same time. I must be at least six to eight inches from the speaker’s face, and I eventually ask them to repeat what they say and slow down the timing and phrasing of words when I can’t hear them. As for unfamiliar people, instead of an ASL interpreter I use an app called Otter which works well by transcribing everything that is being said in group conversations.

Because RTD is a unique condition, I face a mix of challenges and opportunities in life. Having a physical disability with normal levels of intelligence is often difficult and isolating. Most programs for people with disabilities focus on those with cognitive or behavioral issues and are not a fit for me.  Activities for able bodied people often do not consider someone with my constellation of disabilities and are not accessible for me either.  I sit somewhere in between the world of the disabled and abled.  I have a strong desire to belong and live life as a regular person, and it’s hard to fit in. However, I am driven and motivated and believe I can use my situation to educate the world about people like me. I value advocacy and have confidence in my ability to bring about change in society around me. I have lots of hobbies and close connections with peers but not as many as people without RTD do. I have several friends with the same disease, and we started a support group on Facebook years ago that involves sharing stories about life experiences with RTD. This network has helped us recognize each other’s struggles to enrich our personal identity, as well as offering advice to both myself and the entire disabled community.

Now that I am an adult and still in college, I haven’t been as active socially as I was in the past. I only have a few close friends from high school, including the one who still lives in my town and we both are able to see each other multiple times a year. The other two moved away so the only way I can still see them is to do  so virtually. Right now I generally hang out with family members rather than being able to go places to meet new friends.  My siblings are totally independent and outgoing now, so I wish I could live like this. While most people my age usually find jobs in the community, I’m unable to pursue the same opportunities due to my physical limitations. Part of the issue is that RTD prevents me from driving alone or getting out of the house without assistance. This makes it a lot more difficult to make friends now than it was in high school. I have some college experience as though it has  taken me years of searching for social opportunities with appropriate peers. I’m currently a part-time student at HCC where I’m never active in a club or extracurricular organization. Last semester I found an opportunity to serve as a staff writer for the college newspaper which made me feel a little better about being active again.  

Dating is another obstacle some people face if they cannot find the right partner because of their disability. It doesn’t make any sense to me because I know there are plenty of people that love them. I am now 25 years old and still single, but I still hope one day I’ll find a partner and places to connect with other individuals with similar challenges and personal experiences.  I tried different dating sites  like Match_ Bumble, and Facebook Dating. However, almost all of them charged me a monthly fee for subscription and there were too many scammers and losers on these sites. Despite feeling frustrated it wouldn’t meet my connections, I prefer looking for love offline as long as I am engaged in activities and the workplace. If community resources are made available and barrier-free, I will have more opportunities in life. I don’t want anything to discriminate or exclude me…I am a believer in activism, and I always understand my rights and try my best to be social and helpful to others.

The next step I would take to narrow connections in life is to find a path. I chose to pursue a career in social work since I enjoy helping others search for solutions to improve their human wellbeing. For instance, I’m interested in working at a local government agency that regulates funds for disability benefits and services like Medicaid and Social Security.

There are so many things people with RTD can do to build strong connections with the real world. As a social worker, I will work hard to succeed in meeting everyone’s needs and break down all barriers. Developing meaningful relationships with fellow social workers can benefit my connections, too.

It’s time to start thinking about possible solutions that may allow people like me to make decisions about the future of social interactions. Friendships and interests in hobbies change over time. There are many ways to be successful including use of technology, learning new skills, and getting to know people who are able to contribute to the same mission. A career in social work is my preferred goal to make a big difference in the lives of at-risk populations including not only people with disabilities but also low-income families who can’t afford education and healthcare for children. To be active in this field I would start volunteering and finding membership organizations to allow social work students to learn the skills and develop communication methods in working with clients and employees. I will try harder to make that happen and continue the efforts to maintain close connections.

Fallingwater

 

On May 11, 2022, I did a presentation in my art class explaining how this original work of art inspires me. I studied the work designed by an American architect Frank Lloyd Wright called the Fallingwater, and created a new version of this work of art with use of my own imagination. It is a vacation house designed and constructed in 1935, which consists of approximately 5,100 acres of natural land around it. The bottom part is filled with rocks and waterfalls flowing through the stream.  The house rises at least thirty feet above the waterways supported by contilevvered concrete. Beneath the surface of the grounds are coal and clay that move up the mountain.

I chose the piece of artwork because Fallingwater is one of the most inspiring places across the globe to millions of people that view its strength of architecture and nature. It is located in Western Pennsylvania which became known as Mill Run. It has been open to the public since late ‘60s as a historical center for guided tours where anyone can go inside the house and observe the surroundings of nature. One thing I liked about the work is that the house and site together formed an image of a man’s desire to engage with nature. This figure is an example of how people appreciate nature as a concept of their daily lives. I am struck by the point where Wright’s partnership with Edgar Koufman was a huge success in developing ideas about modern design and natural beauty.

After the construction of Fallingwater began, the floor plan isn’t the same as in most private homes. It is made out of stone instead of wooden surfaces or tile, with very low ceilings and corner windows that break the box of a house. On the first floor is a compact kitchen, living room, and simple rooms. There are three small bedrooms on the second floor and a study room on the third floor. The chimneys are made to be the highest point of the house.

In my imagination, Frank Lloyd Wright is one of the greatest architects of all time, because he introduced organic architecture as a pharmanon that many artists show interest in the visual arts field. Organic architecture is a term used to describe the harmony between humans and the natural environment. I find these design features interesting because when Wright put together his work he used glass and cantilever as the main elements of Fallingwater, along with a central core for stone and fireplaces. In addition to his work he added sculpture to terraces made of reinforced concrete with corners in right angles.

I’ve always wanted to feel connected with the natural world through observation of Wright’s artwork. Organic architecture is my favorite of all the topics I’ve studied this semester. With that in mind, I’m even hoping to visit Fallingwater one day and take a tour around it. If you were like me, the pieces of advice I would give you are to learn more about his journey and development of architectural techniques that are relevant to art history. There are tons of articles and publications available to read about the architect, so don’t feel discouraged when reading. You can select whichever sources you find that you feel are most accurate to you.