Frontline Initiative: Supporting Healthy Relationships
The relationship I wanted in my life
My partner Keith and I met online in 2009. Keith lived in Placentia, California, and I lived in North Platte, Nebraska. I’m not good at social gatherings because when people see me, they don’t usually see “me.” I’m willing to talk to anyone at any time, but when people look at me they often see the scooter I use or the way my cerebral palsy shapes my body. If the person I’m talking to is only thinking about my disability, they can’t possibly listen to me or get what I’m talking about. That makes it very difficult to get what I need or want out of the conversation. That is why I wanted to meet someone online. When I made my profile, I did say my disability was cerebral palsy. That way the person could decide if they wanted to talk to someone with cerebral palsy or not. Then we could get through it and we could talk about other interests or what we want in the relationship.
While Keith and I lived far away from each other, we called each other all the time. We also went back and forth to visit each other. I don’t like to fly on airplanes, but I knew what I wanted and that meant getting on an airplane to see Keith. This also meant I had to do some planning. I had to set up how to get myself to and from the airport. Sometimes I would have friends take me to the airport. Other times I would call a shuttle bus that went from North Platte to Denver Airport. At the airport I had to request a wheelchair and make sure there was someone there to help me get from plane to plane.
I knew how I wanted our relationship to look. I wanted to have a loving, honest, emotional, fun, funny, long-lasting, and physical relationship. Keith and I both wanted all these things, we just had different definitions on how it looked. Therefore, we needed to learn together how to get everything we want in our relationship.
Keith and I both have disabilities. Therefore, we both have to be aware of our own disabilities as well as the other person’s disability. With any relationship, the people should talk about everything. With having disabilities we needed to know what really matters, so we could figure it out to have a good relationship.
Part of Keith’s disability is keeping everything on track and remembering. Therefore, since we are a family, we need to come up with ways that kept us all on track. An example is when we get in the van to go somewhere, we have a checklist we go over. The checklist provides us with security in our disabilities.
Having a family
Kepler Greggery Sykes
Keith and I decided we would like to have children and start a family. Thae process was longer than we thought or wanted it to be. I thought that since Keith and I were two adults making a major decision, getting checked out by doctors, and doing all the healthy and right stuff, that we would get pregnant and go from there. But that wasn’t the case. Even before Keith and I met, I wanted to learn how to care for a baby. I wanted to learn how to care for my body so I could get pregnant and carry a healthy and happy baby. I wanted and thought I would have support from family, friends, and people who are supposed to support me. Some of them were supportive of me getting pregnant and having a baby. But some of them were not supportive. Not having that support was very lonely and confusing to me. Some people even thought that I shouldn’t have a child. They tried to convince me that I shouldn’t. But Keith and I had made up our minds. We both want to be parents and we are going to figure this out together.
Keith also wanted to figure out how to care for a baby. We thought together about the kind of support we like to have for ourselves. We shared what we knew about having and raising children. We talked about how to advocate for ourselves with doctors, and each other. We learned about caring for ourselves while also caring for a baby. We practiced diapering – first a newborn, then a six-month old, then a baby who is moving. We talked about how we would want to raise a baby, a child, and a teenager. We talked about supporting each other emotionally and physically.
Some people believe that having a loving, emotional, physical, sexual relationship should not happen. Therefore, people with disabilities either don’t have relationships at all, or they don’t know what relationships could look like.
Supporting people in relationships
Personally, I think Direct Support Professionals (DSPs) have a difficult job. They’re working to make sure that people with disabilities have what they need and want. Some of these ways may be different than the way people without disabilities get what they need and want.
Usually, when people want to have a relationship with another person, they can tell family, friends, or co-workers all about the new, exciting relationship they have. Often people with disabilities do not have support to have any kind of a relationship. Some people believe that having a loving, emotional, physical, sexual relationship should not happen. Therefore, people with disabilities either don’t have relationships at all, or they don’t know what relationships could or should look like. Some people are rejected too many times and give up altogether.
The relationship between a DSP and those they support is a working relationship, and might look different based on the person’s needs for support. But it also includes supporting the person to have relationships with others. A person receiving supports can tell the DSP about their relationships in general, and decide to share if there is something more private. But if the person doesn’t want to talk about it, that is okay too.
All relationships needs a lot of work from the people who are in the relationship. They also need the support of the people around the relationship. Thank you for listening to me. I hope I gave you something to take with you that will inspire you and others.