I am a person who needs a lot of physical assistance throughout the day, at home and at work. Although I have been married for over a year, I still need the same level of support as before to live my daily life and to work at my job. I have learned a lot about making a good working relationship with the people who support me at home and at work.
I believe that a good working relationship happens at different levels. I have had several people who have worked with me for years, and I have given it a lot of thought. One level is having a friendly relationship with the person who supports me. I get to know the person and they get to know me, and we learn about each other's likes and dislikes. While this is happening, we are both learning about whether we can trust each other. We show each other that we care about each other as friends and human beings, not just as coworkers or boss-employees.
For me, one thing that works to get to this level is to interject a little humor into the relationship. By joking and laughing, they get to see what kind of a person I am, not just as a hard-nosed boss who has work for them to do but as a full human being, and at the same time I am learning what kind of person they are. I am getting the things I need done, but it's in a relaxed atmosphere. It's not tense and uncomfortable for them even though they may be working hard--and believe me, my aides do work hard.
At a deeper level--and this doesn't happen with everyone who works with me--trust builds between us to the point that we can rely on each other. There are some people who work for me who I feel I can trust with my life. I know that they will do whatever is needed. I can give them money or a blank check and a key to my house and send them grocery shopping, knowing that they will do the shopping, bring the groceries home and put them away, and will not violate my trust by stealing from me or destroying anything I own. I can have them work in the house when my wife and I are not there. I know that if we had a bad snowstorm they would not let that stop them from coming over. I know that if our phone went dead and they didn't hear from us and couldn't reach us, they would come over to the house to see what was wrong.
I think that at least some of my support people feel the same way about me. They know that if anything happened to them, my wife and I would do what we could to support them. Our relationship has developed to the point that it is a real give and take friendship. It is deeper than the level where you are just friendly with each other, when you are first getting to know each other.
Obviously, not everyone's situation will be the same as mine. Not everyone will be able to find people who are as caring as the people who support me. But it works both ways. I had to be caring toward them, and show them that we trust them with things like our possessions, for the caring relationships to develop as they have.That doesn't mean that we always agree on things. It can be hard for the two men who have been with me the longest to separate the aide relationship from the friendship. Sometimes they get fatherly or brotherly toward me, and tell me their opinions about how I should do things. Then I have to tell them that I am capable of making my own decisions about things, even though they may be wrong. I will say, "Thank you for the support, but I'll just have to take the risk."
For example, my wife and I just bought a house that is fully accessible for us. They were both excited for us, but they got nervous about the area of town it was in. They had heard bad things about that part of town, without knowing much about it. They were trying to be nice about it but also to talk us out of it. Finally, they said, "Well, we know that you have a good head on your shoulders, and you will do the right thing." Now that we are there, they see that they had misjudged the neighborhood. It is a great neighborhood, with friendly families. Some people are low income but the people are nice and helpful, and their kids come over to play on our ramp. Some of the older kids have offered to help us with things, like getting things at the store. They also seem eager to learn about us. We want to have a good relationship with the kids, who seem to be well-mannered, and we hope that will help in getting to know their parents.
I have had to learn how to tell whether I can trust a person or not. It can be hard for people with any kind of disability to trust anyone, because they have had so many bad experiences with people who were supposedly there to help them. They may never have had the opportunities to express their opinions or feelings, or they may have never felt that their opinions and feelings were valued or taken seriously. They may have had the experience where the person without a disability was believed over them, or they may have been told that they don't know what is best for them. They may have had people they cared about just leave without anyone explaining where they were going or why they were leaving. With these experiences, it can be hard to trust yourself to know whether you can trust someone else.
I have learned some cues to tell me whether I can trust someone, even when it isn't obvious on the surface. It is obvious when a person is mean or abusive, but there are also people who act as though they are your friend but whom you learn the hard way you should not have trusted. Some of the ways I use may sound strange. I had one aide who, whenever he was around, one of my cats would act weird. He would hiss at the guy or try to avoid him. Another cue was when he would come up with excuses to borrow money from me. He would call up and say his car wasn't working and he needed to borrow money to get it fixed so he could get to work. Later we noticed that several things, and some money, were missing. We couldn't prove it was him, but I ended up having to fire him. That was very painful for me, but I am glad I did it.
Now, I go slow. I ask questions like whether they have worked with agencies before, or with people with disabilities. If they have, I ask them about the relationships they've had. I ask the agency I work with to get background information on the person. I pay a lot of attention to what people say and how they present themselves, and I am careful about what I say until I know I can trust them on a deeper level. I have learned to pay attention to the feelings in my stomach. If I have an uneasy feeling, I know something is not right, and I listen harder to whether the person is telling the truth. I've also learned not to hire the first person who comes along, especially if the person sounds like they are unrealistically good. Instead, I interview several people and pay attention to how I feel about them.
A trusting relationship is critical. It helps me grow inside, and be more independent. I have many trusting relationships now, with friends and coworkers as well as with aides, and they make me feel like a valuable part of the community. I feel like an asset to the lives of these people, like they respect me as much as I respect them. When I have important decisions to make, I appreciate that I can ask the people I trust for their advice, and that they will give it to me without trying to take control over my life. I also appreciate that if I make a decision that is against their advice, they will keep respecting me even if they don't agree with my decision. I like it that there are people who will look out for me and my wife, without taking over. Knowing this makes me less afraid to take risks, and helps me feel that I can open up about my feelings with people. It has also helped me to understand which risks I shouldn't take, because the people I trust are willing to tell me the truth and to give me constructive criticism. My experience has taught me how important a trusting relationship is for anyone with a disability. Because of our experiences, we may need agencies to find people whom we can trust, if we cannot find them by ourselves. But even then, I think the agencies should work with people with disabilities to find people we can trust, rather than making the decisions without our input. We should have the final say on who is hired to work with us and on who will spend time with us. If that is too hard, the agency should consult with our family members or friends to make this decision. There should be a probation period before a final decision is made as to whether it is a good match or not. Within that probation time, that's when the person with a disability needs to feel that person out to see how well it's going to work.
It can be really hard for a person with a disability to fire a person, even when the person is not taking good care of them. When that needs to happen, it's important for the person with the disability to have other people they trust who will support them in taking this step. There can be many reasons for it being hard, like fear about what the person will do. When I fired the aide who was stealing from me, I did not do it at home. I did it in the office of the woman who runs the consumer-directed program that I am a part of, and in her presence. If you have someone with you, the person is less likely to retaliate or threaten you, and you have a witness whom you trust and who can help with the process.
In conclusion, I'd like to say that it is important to be careful about trusting people, because you can be hurt badly by someone who betrays you. Build the relationship over time. However, if I had never had anyone I could trust, I would probably feel lost and be skittish about sharing anything with anyone. I would probably keep everything inside, and I would not grow. But trust has to go both ways. Trustworthiness comes from both people, not just from the person providing support.
Note: This article was prepared with the assistance of Bonnie Shoultz. Its contribution is in its discussion of how the person with a disability creates and manages trust in supportive relationships. Most other writing on trust is from the perspective of an agency or a person providing support.
Preparation of this article was supported by the National Institute on Disability
and Rehabilitation Research, U.S. Department of Education for the Research
and Training Center on Community Integration through Cooperative Agreement
#H133B00003-90 awarded to the Center on Human Policy at Syracuse University.
The opinions expressed herein are solely those of the authors an no endorsement
by the U.S. Department of Education should be inferred. >