Friendship Corner: Angelina (Fall 2018)

Periodically Widening the Circle will feature a story that showcases efforts to connect people with and without disabilities in deep and meaningful ways.  Each story will include a link to an “analysis” of the elements within the story that we can look to as lessons for how to make friendships occur in other people’s lives. 

Angelina

By Katie Driscoll (driscoll@arcmass.org

Angelina is 24. She currently enjoys living with three other young women around her age. The first thing we did to help Angelina connect with others was to ask her about her interests. We completed a three-page interest inventory which provided many suggested activities that could help her connect to others in her community.  During this time, Angelina had identified many interests; however, together the team and Angelina reviewed the list to determine which areas to focus on with the greatest opportunities to form connections to others. Angelina expressed her love for participating in road races. She started participating in such races over a year ago when her previous program manager, Jess, asked if she would like to participate in one with her.  Since that time she has participated in more than six races.

Jess had built such a strong relationship with Angelina during the time she worked at Angelina’s home that when she transferred she had asked to stay as relief staff so she could still participate in races with her. Jess has really acted as a community connector for Angelina within the 5k racing community. They have pre-race brunches and many post-race activities. This has provided additional opportunities for Angelina to connect with others and to make friendships outside of her service circle.  Recently Jess resigned from her relief staff position and is genuinely Angelina’s friend.

Some progress has been made since we started this initiative. Angelina registered and participated in multiple community 5K races, including the 2017 Costume Dash 5K race where she was able to see many people from last year’s race. Angelina is currently preparing for the 2018 Costume Dash race, where there is an approximate group of six people who have formed friendships with Angelina and Jess through 5K racing. In fact, during an unfortunate leg injury to Jess over the summer, one of their fellow race friends relayed he would also like to start training to support Angelina in future races if Jess were unable to. Angelina’s network has expanded beyond her friendship with Jess and together they have widened their circle. Currently, we are making every effort to explore other races especially in Angelina’s home town, as well as participate in reoccurring races, and with the same people over time.

By the way, Angelina happens to have cerebral palsy, developmental delays and moderate anxiety, just to name a few conditions. She resides in a medical-based group home with 24-hour staffing which includes residential counselors, CNA’s and LPN’s.

Recently Angelina’s support team focused on gear that would increase Angelina’s independence and opportunities to connect to others while racing. Where she is physically dependent for most of her physical needs, the ability to self-hydrate and manage her own devices would be optimal for her and her race partners in reducing their needs to stop on their routes. Angelina’s team researched the perfect hydration pack to support these needs, and assure she has appropriate race wear available for each event. Angelina also loves to relive the experience of the races and share with others. She has attempted to record these events but without proper equipment the footage is difficult and not always enjoyable to view with others. A camera equipped for live footage and action is being pursued to allow for better production for viewing and sharing these community race experiences with other community members.  Angelina and her friend Jess use social media as a platform to share their race experiences with their networks as well to connect to other races and participants, and the live footage will be a great addition.

We have experienced and anticipate some challenges along the way. Some of these challenges are the amount of money it costs to register for each race. Some races can cost more than fifty dollars, which would be almost half of her monthly spending money. Many races take place in the Boston area where it can be very difficult to find parking for a handicapped van with a lift. These races also put a lot of wear and tear on her wheelchair as her manual chair is not specifically designed for racing.

Because road races are seasonal (Spring-Fall), we wanted to help Angelina maintain contact with her fellow racers over the winter.  We reached out to Angelina’s teammates and they were eager to connect.  Staff drove Angelina to Boston for brunch with 2 teammates where they chatted, laughed, and planned for some upcoming races.  When staff picked Angelina up she remarked on how much fun she had.  Tellingly, she also reported that that this brunch was the first time in her life that she ever spent time with just friends without having parents or staff also around!  The power of friendships…

Lessons Learned

This story contains some very meaningful lessons, including:

  • Even though Angelina lives in a 24-hour group home with all of its staffing constraints, BAMSI was able to figure out how to devote individual time to Angelina. This required a staff person (Jess) who shared Angelina’s passion for road racing to donate personal time to help Angelina become part of a team.
  • Staff took time to really listen to what Angelina was interested in. Despite Angelina’s disabilities—including using a wheelchair—they did not dismiss her desire to be part of a road-racing team.  This willingness to believe in such possibilities is critical in our work.
  • The relationship between Angelina & Jess illustrates the confusion that arises when one of the people in a relationship is paid to be there. True friendships are freely given and do not depend on some sort of compensation (pay, grades, course credit, etc.)  But many friendships have evolved from relationships that began with one person being paid to support the other in some fashion.  Jess’s role as community connector is the most helpful role she can play during her paid time.  Jess’ determination to establish a relationship with Angelina that is not “tainted” by her paid staff role was a commendable step for the two of them.  Interestingly, many organizations have “rules” that limit contact that ex-employees—even very good ones–can have with the people they once served.  These rules should be re-examined so that promising relationships can continue and grow.
  • Many of the races that Angelina and her team participate in are both expensive (she does not have many financial resources) and pretty far away (transportation/parking is an obstacle). Efforts are being made to find more racing opportunities closer to home, which may also increase the number of local racers she can meet (and possibly befriend).
  • Angelina’s contact with her teammates is not restricted to just the races themselves. She participates in pre-race brunches and post-race activities as well, clear evidence of a growing sense of belonging. 
  • And Angelina’s contact with her teammates is not restricted to just the racing season. Her winter brunch get-together (without staff!) is clear evidence of deeper relationships developing.  Because true friendships are reciprocal, perhaps Angelina could be supported to invite one or more of her teammates to dinner at her home.
  • Care has been taken to ensure that Angelina looks the part of a team road racer. Many of the races have themes and Angelina is supported to wear whatever is necessary—including costumes—to fit in with the other racers.
  • Angelina’s wheelchair is not really well-equipped to handle the rigors of racing. Thought is being given to how to help her secure a racing wheelchair.  This will not only be faster and easier to maneuver, it will likely raise her status as an athlete.
  • In order to help Angelina deepen her connection with her teammates, staff had to have the nerve (and skill) to make the “ask”. This is not easy and may require training and practice by the staff.
  • True friends can be trusted to be alone with Angelina. It’s a very big deal that Angelina can spend parts of her life with supports that are natural.

 

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