Spotlight on Joseph and Nicole Shortsleeves
/BY CARA SCHAEFER
Joseph Shortsleeves has a happy place: anywhere outside. It just takes some extra planning to get there.
Since Joseph is non-verbal and has differences in brain development that can make communication and mobility challenging, we spoke with his sister, Nicole, about exploring the outdoors with her brother and making the outdoors more accessible to those with disabilities.
Photo courtesy Nicole Shortsleeves
OUT THERE: Can you tell me a bit about your brother?
NICOLE SHORTSLEEVES: His name’s Joseph. He’s 20 years old, almost 21. He was born with multiple diagnoses, including microcephaly/lissencephaly, which means “small head, smooth brain” and is the cause of him being someone who uses a manual wheelchair. He also has epilepsy. Behind all that, he’s this lovable young man who’s just like us. He cares about others. He is just like any other 20 year old would be.
OT: How does nature play a role in you and Joseph’s life?
NS: Joe likes to go outside. It’s calming for him. Recently he rented a bike, well mom did, where he sits out in front, and he constantly wants to be on it. He went on one once, one or two years ago, and at that time he didn’t necessarily have a way of telling us because he didn’t have his communication iPad at the time, but when he finally got it and she asked him about it he just wanted to keep going. It allowed him to tell us that he wants to be outside. It didn’t matter what time of day, it didn’t matter if it was rain or shine, warm or cold, he wanted to be outside. It allows him to talk about something other than, “Oh hey, we are about to change your Depend,” or ”Hey, we are about to give you a bath.” It allows him to be more conversational. Personally, I love all of it. Hiking, biking, as long as I’m outside I’m good. And I think together it brings out more time to have memories.
OT: Do you have a favorite memory of being in nature, the two of you?
NS: Back when he was eight and I was ten, we went on a family camping trip. We took out the seat to the back of the van, and we set it outside so he could sit in it, but he just wanted to be on the ground. I remember us sitting there, and he was just picking up the rocks and playing with the leaves, and this bug came flying, and he wanted to catch it. He tried to get a mason jar that was nearby. We were able to communicate and be like, “Oh that’s what he wants”, to catch the bug. I think it’s called a jitterbug. We just looked and played with it for the longest time. We had it for the rest of the night, but I just remember feeling like nothing else was going on in the world. We were out in the middle of a state park and we were just being kids, having fun in the woods, playing with a jitterbug. That’s all he wanted, and that’s all I wanted, and so that’s all we did.
Photo courtesy Nicole Shortsleeves
OT: What do you have to keep in mind when going outside with Joseph?
NS: I have to bring everything medical that he needs. That is a big thing, because if something does happen, like if he has a seizure, if it is three minutes or more we have to give him his emergency meds. We always have to remember his water. You got to stay hydrated. And if I take a sip of water, I give him water. If I give him water, I drink water. And it helps both of us stay hydrated. It’s also thinking about his chair and where we’re going with the environment and trying to make it so that there’s less hassles, whether it’s rocks or bumps or if it’s a walk around the neighborhood sidewalks, because his chair isn’t made for the outdoors. It’s made to go from point A to point B on a sidewalk, but it’s not made for all the sticks and stones and trees and roots and all of that. It’s making sure he’s safe but also still able to have fun.
OT: How do you think we can make the outdoors more accessible for people with disabilities?
NS: Not every place has bathrooms, but if it’s a state park or a nature park area that does have bathrooms, that they have an adult changing table. It’s hard to change someone’s Depend while they’re in their chair. If you are out in a wooded area, you can’t necessarily change them on the ground if you can’t lift them or transfer them to the ground. Another thing: any area that has water, whether it’s the ocean or a lake, making it so that there’s a ramp, so that way chairs can go up or down, closer to the water or away from the water. Joseph loves to be along the water. And it’s hard to find beach wheelchairs that are suitable for him and ramps, because most wheelchairs cannot get to a beach because of the sand.
OT: There’s something you said the last time we talked about how we could personally be more welcoming. What was it?
NS: It starts with a smile. It makes anyone’s day, whether you use a chair or you use your own legs to move around. It can set that vibe or that mood of like, “Hey I’m welcoming! Hey how are you? I’m not going to necessarily treat you differently. I’m going to be respectful.” You can be respectful, but also if you don’t understand how to communicate with someone like Joseph, you may not realize that they’re just either trying to say hi or trying to say, “Hey, can you hand me this or that?” Or “Hey, can you help me with this?” And Joseph does have those questions; he just can’t say it like we can. But facial expression is one of the most commonly used forms of communication, and it’s very universal. Facial expression is 99%, I’d say almost 100%, of communication.
To hear more about Nicole and Joseph Shortsleeves, visit them on Youtube or Instagram. You can also support their efforts to get a wheelchair-accessible van for Joseph here.
This interview has been edited for brevity and clarity.
