Thirtieth Anniversary Issue on Progress and Priorities in Direct Support

Direct support professionals are important to me because they help me on my journey in my life, which is basically helping people speak up for themselves and speaking up for others. And that's part of my journey, and that's what I choose to do.

And they become part of my team. And we can call it team Mission Impossible for this purpose, because so many people think to teach people to speak up for themselves when they've never done it before is mission impossible. I've had direct support professionals who have helped me with that mission, and so far, it's been a success. And without their support, I can't do what I do.

A direct support professional is someone who comes alongside you and supports you. For me, they're my arms and my legs because I have, as you can see from the video here, I have one arm that works and one arm that just completes the set. And I have mobility issues. I can't use my legs. So, they [DSPs] are my arms and my legs because if I can't reach something or if I can't do something, they assist me. They don't do it for me. They assist me. And it's teamwork. They become part of my team.

There have been times in my life where I haven't had the direct support. And I get very angry because all I'm asking is for people to provide me the supports I need to have the life that I want. I'm not asking the system to do me a favor. I'm asking the system to give me what I need to have the good life that it promises me.

We have direct support professionals come alongside us and tell our story together because my story becomes their story by working with me and for me alongside me. I don't want them to be invisible because they are part of my life and they're a very important part of my life. And I understand that. And I'm grateful for all the direct support professionals that have worked with me for the many years that they have. And I'd like to say, “thank you” to all of them. Well, I want people to know that the direct support professionals help those with disabilities and those they support be visible in the communities in which they live. Because so many people with disabilities in today's society are afterthoughts. Oh, we forgot to invite them to something where their input matters. And to direct support professionals help us have a seat at the table so our voices are heard.

How is direct support different from caretaking?

Well, sometimes they do have to care take, because we might have an emergency where, where we need their support. Not all the time. Things happen in life. And you have to be willing to be flexible. And if you, if you value the person that you're working with as the human being they are, you'll understand that. But it's really nobody's business but those who they're working with. They don't have a sign on them that says, “I'm the caretaker. Ask me a question about them, or I'm their babysitter.” It's all about societal perception. How do you know who they are? Do they have a sign on them that says, I'm a babysitter? No. They are people who are helping whoever live the life that they want, that they choose to have, because we all have choices in life to have the life that we want, and sometimes we all need the help. There is no such thing as being independent in life. Nobody is independent. There's interdependence. So I'm interdependent on them to have the life that I want.

When I refer to interdependence, I like to think of it as nobody can fix everything on their car, so they have to go to a mechanic. So they're, they're interdependent on the mechanic to fix the car. Like, I don't expect somebody to fix my chair if it breaks. I need somebody to take me to the people who can fix my chair. So that's where the direct support professionals help me have my mobility so I can continue to do the things that I do. Nobody is truly independent. Nobody does things alone. Everybody needs somebody at one point or another. If, if everybody was independent, the world would be a perfect utopia. There would be nothing wrong with the world. But guess what? The world is a system of interdependence because we all need somebody.

What would your life be like without direct support professionals?

My life would be boring and a life filled of wonderment. Well, one thing I wonder is if I don't have the support on a given day, what am I missing out on today? What haven't I had the opportunity to do today that I would've if I had the support? So I think for me, it creates wonder and, gee, I wish I could do that because there have been times in my life where I haven't had the direct support. And I get very angry because all I'm asking is for people to provide me the supports I need to have the life that I want. I'm not asking the system to do me a favor. I'm asking the system to give me what I need to have the good life that it promises me.

I'd rather be out, out in front than be on the sidelines watching the world go by. Because you never know when your opportunity's gonna come to say something to an elected official or just somebody you meet and create a “aha moment” like, oh, gee, I never thought about that until you said something. And that's what direct support professionals help me do. They help me create the aha moments, which creates further discussion and further dialogue and maybe some more allyship.

You have to come alongside and understand the person you're supporting. But you also have to understand the person who's supporting you has a life outside of you. And it takes a partnership and collaboration to have that discussion. Now, some people with disabilities aren't as verbal as I am, and sometimes you have to have discussion with a family member or somebody who knows them well, but remember, we are all human beings and we all have limitations. They're not perfect human beings. We all have things that we need to sustain life for ourselves.

What do you want in a direct support professional?

The top thing that I want in a direct support professional, the first thing is the ability to actively listen and not come right in and do what my goals say, because I don't live by goals. I live by having the conversation like, this is what I want to do today. This is what's important to me, and maybe a goal will be mixed in so everybody will be happy. I want somebody to listen, somebody to share me with because it's a partnership. It's not, it's not just a one way, a one way relationship. It's a partnership.