The 1967 Beatles song “With a Little Help from My Friends” from Sgt. Pepper’s Lonely Hearts Club Band describes how I see my future. Like other teens and young adults with disabilities, I found it difficult to accept having help from others with everyday tasks.
As I grew older, there were days when I would think maybe if I worked really hard, I wouldn’t need support next year or the year after, possibly. Today, though, I have come to accept that I will likely need some level of support for the remainder of my life. However, instead of trying to change my circumstances, I have now come to understand that learning to ask the short phrase, “Can you help me?” and allowing myself to be vulnerable has led to some truly wonderful relationships.
Giving and getting help
Here’s the thing though: I’m not the only one getting the help. Relationships work both ways. The people I’m talking about are those who came into my life at different times, but all came as support staff. I knew that to make the relationship work, it had to be something we both enjoyed and benefited from, but there also had to be rules and expectations. Most jobs, after all, have them.
Most of the staff who have worked with me come into the position somewhere between the ages of 18 and 20. Some of them have had more exposure and experience in the world of disability than others, but I let them know from the beginning, this is okay. I don’t expect a Ph.D. in abnormal psychology. What I expect is compassion, sensitivity, a fun-loving personality, good social judgment, and an open mind.
I let them know that it’s okay to come in a little stressed on occasion. College is stressful, and life is not all butterflies and rainbows. It’s okay to be a little nervous at first. I don’t expect them to know everything. Every job is a learning experience.
Before a new person starts, I email them a two-page document that tells about all my diagnoses and how they affect my day-to-day life. This is required reading prior to beginning the position, but I do let them know they can feel free to ask questions or share concerns at any time.
Learning and growing together
During our time together, we usually make dinner, might go to Target, fold laundry, or order pizza and watch a political town hall. (I’m a politics junkie, what can I say?) They help with independent living skills as well as social supports. I let them know in the beginning, “I don’t expect you to be a caregiver. I hate that word. You’re more of a peer model. I’m Adria, You’re (Insert Name Here.) Let’s have fun.”
We usually do have fun, too. Over time, the relationship becomes something very relaxed, almost like a big sister, little sister sort of thing. We both look forward to it and grow from it. I know direct support providers often work very hard, and because of current federal funding, often make very little money. I also know that if it weren’t for these particular college students, I would not be living independently. So, occasionally, I will bring them a little prize at the end of the week like a bag of their favorite candy or a cookie or send them a text when they’ve had a difficult week or wish them good luck on a test they’ve been holed up at Starbucks studying for since last Sunday.
I really like the setup we have together because they are able to gain more confidence in themselves by learning that they can truly enrich the life of another person who is like them in so many ways, but in other ways, truly needs them. They also gain critical 1:1 career experience working with young adults with disabilities, and I am able to keep living and loving this beautiful thing we call life because of a little help from my friends.