When you hear the word “disability,” what comes to mind? Someone in a wheelchair with a physical disability, a cognitive delay (sometimes referred to as a developmental delay), a mental health disability? While there is a range of medical, developmental and mental health disabilities, there are some commonalities among them all. They are all people, created unique with different abilities, gifts, talents and interests and a need for acceptance and connection. While some individuals are able to live independent lives, many need varying degrees of assistance.
What are some ways these individuals stay connected, and what are some relational challenges? How does someone who is unfamiliar and uncomfortable with some or all disabilities relate to a person who is disabled?
Sarah Mickow, mother of Olivia, who has complex physical disabilities, shares ways to connect with her child. “Start with a smile and talk to her. It takes time for Olivia to feel comfortable and know that she can be herself.” At 10 years old, Olivia is still learning and practicing how to respond when asked why she’s in a wheelchair or why she isn’t eating (she gets her nutrition through a feeding tube). Practicing this can feel uncomfortable and cause anyone to shy up a bit, which makes meeting new friends difficult. Her sisters are constant friends who enjoy Olivia’s personality and would agree with Olivia’s statement: “I am kind, sympathetic, and I love to read and draw.”
The Rochester Raiders adaptive floor hockey team was a fantastic way for Noah Johnson to connect and build relationships when he was in high school. He still fosters those relationships with the help of his parents. Noah is now working on new ways to build relationships, as he has graduated from all school programming. He enjoys bowling through Special Olympics, playing on the Rochester Mustang Sled Hockey Team and working at TJ Maxx, greeting customers and organizing shoes. He also enjoys close relationships with his siblings and is able to spend time at least once a week playing games and hanging out with two of them who do not have their own families yet. Noah’s siblings and parents transport Noah to activities and family outings, as he needs reliable, affordable transportation that he can safely access with his wheelchair or walker in all weather conditions.
Noah’s cognitive disabilities can pose challenges to forming relationships. Noah needs extra time to process information and find the right words. Taking time to communicate with Noah is a gift for anyone who takes time to listen! Noah’s words to the community are, “Look at the person, not their accessories.” You can get to know Noah on his new podcast, “The No Free Passes Podcast.”
While many disabilities can be seen, many cannot. As a seasoned adult, Felicia journeys through life with a cognitive and mental health disability. Felicia shares, “God, (my) parents and ABC (Ability Building Services) staff are my friends.” Relating with her family can be difficult because, “It means I am often arguing with people. My mom also has mental illness. We can’t have a good relationship because she is always mad at me.”
Felicia shares, “I need to have support in the community because I’m considered vulnerable. I can’t count, and I have a hard time reading, so buying things and understanding how much things cost is hard. I’m really glad Rochester offers so many classes for people with disabilities, like Community Education, parks and rec. and other organizations. I also belong to a Bible study that is developed to take the Bible at a slower pace, which I love.”
Felicia faces unique challenges because people cannot see her disability. She says, “Sometimes people make an assumption that I can read, so I make things up to written questions. People can have lots of expectations of me. I really don’t like it when people act as if I wasn’t there. Sometimes we have guests at my house, and no one talks to me! I am a real person and like to talk to others. Sometimes I worry that people won’t be interested in what I have to say if everything is going okay in my life, so I make up drama so they will talk to me.” Felicia suggests greeting her and others “in a kind manner.”
Caregiver Nancy says, “We cannot have the same expectations of some individuals with disabilities as people who don’t. When there is not an understanding of cause and effect or consequences and we assume or expect the individual with disabilities will comply to our instructions, it can cause confusion, anxiety and possibly an unsafe situation.”
We can’t always see the underlying medical issues or physical disabilities as with my son, Aaron Songstad. Having some cognitive disabilities prevents Aaron from fully caring for his physical disabilities independently. It also requires assistance in many areas of his life, including transportation, advocating and a need for a job coach to assist him at Hy-Vee when things don’t go as planned. Aaron works three mornings a week and would love to work more, but because organizations that provide assistance for individuals with disabilities are short-staffed, Aaron is not able to work more days at this time.
Socially, Aaron enjoys texting and talking to friends that he made in school. Spending time with these friends takes a lot more effort since he aged out of school programming in 2019. Aaron also enjoys connection through parks and recreation adaptive sports and activities, Rochester Mustang Sled Hockey and music programs through Jenny Kruse Music Therapy.
The Rochester community has so much to offer individuals with disabilities, and I am so grateful, but there are many challenges. Prior to the COVID-19 pandemic, insufficient state funds was a problem for disability organizations, which created staffing shortages due to low pay. For example, an employee for a disability support organization can sometimes make less per hour than the client they are assisting at the client’s place of employment. Since the pandemic, the staffing shortage has only worsened, and organizations like group homes have been placed in difficult situations. This greatly impacts the clients that they serve by limiting opportunities to socialize, work and use their gifts and talents in the community. The staffing shortage of job coaches and reliable, accessible transportation is actually causing additional shortages because some of these individuals cannot go to work without their support. The result is causing some of these individuals to become more isolated and limit their ability to relate with others.
Disability is not one-size-fits-all. Caregivers want our loved ones to be as independent as they can be but also to be respectful of their limitations, provide safeguards and support for vulnerabilities and assistance as needed. While there is a great deal of work and awareness that needs to happen, there is also a great deal of gratitude for many organizations and individuals in this community that provide ways for individuals with disabilities to be a part of the community and help foster ways for them to build relationships. ::
:: get connected
Below are a few (but not all) resources in the Rochester community that serve individuals with disabilities.
Ability Building Center
Cardinal of Minnesota
SMB Disability Solutions
Rochester Parks & Recreation Adaptive Programs
Music Care Therapy
Rochester Mustangs Sled Hockey
Special Olympics-Rochester Flyers
Community Education – Adults with Exceptional Abilities Enrichment