Interview #9: Mike and Dana Ritter (C5/6 Spinal Cord Injury)
Almost 25 years of disability gives you great perspective about home and community design.
When you find others who really understand your life due to similar experiences, you look forward to connecting and sharing stories. Scott and I have great connections with friends and family in our own community, but there’s just something freeing to be with others who are living life differently (like we do) due to a spinal cord injury.
Mike and Dana have a blog called Love Like This Life that chronicles struggles and successes in their own life. After reading one of her posts several years ago, I reached out to thank her for sharing their story. We’ve connected a few times in-person and have kept in touch online. We always enjoy hanging out with them, so on a recent visit to their place near DC we asked if they’d be willing to share their story. They said yes and we’re excited for you to hear it!
Mike’s Story
Mike was injured as a teenager (June 1994) in the Bahamas on a trip with their church. He was a member of a performance ministry team with his youth group and while he was doing a gymnastics routine, he over rotated and landed on his face, breaking his neck at C5/6. He was quickly rushed back to Miami, Florida to have surgery on his neck and became stabilized to start rehabilitation and recovery. He worked hard to get better throughout the summer and once he was released from rehab, he put on his school uniform and went back to school to finish his senior year.
Homes Can Be Frustrating
Imagine living in a home with a shower for the first 8 years of your marriage, but couldn’t get in the shower! If you listen to their full interview you can hear about the modifications that were needed to increase his independence in each of the homes he lived. While none of them have been perfect, their current apartment is the most functional thus far.
Dana explains when they were house hunting for their current place, she knew instantly when she saw the location of the microwave in the kitchen that this place was a winner. She rounded the corner to see the roll in shower and immediately wanted to sign on the dotted line. The entire apartment looked “normal” and didn’t have a medical or specialty feel, which made it even more appealing. You know, ahem… universal design!
Here are a few things that make the space usable for them:
- Wide hallways (sure, for ease of use with a wheelchair, but also to reduce possibility for scratches and dents on walls).
- Open floor plan.
- Wide doorways.
- Roll-in shower.
- Adjustable hand held shower head.
- Microwave placed close to countertop height.
- Stove with knobs that are easy to reach.
- All-in-one washer and dryer that Mike can use independently.
- Large bathroom to accommodate equipment, space to move around, and storage.
- Elevator to their apartment and covered parking.
- Close proximity to public transportation, coffee shops, grocery stores, and other retail establishments, significantly reducing the need for private transportation.
Things they’d change:
- More space with lower housing costs, particularly to better accommodate their family as it grows.
- Higher options for hanging storage in the closets to utilize the space more efficiently. They currently just have low hanging storage.
- Options for Mike to be able to roll under the sinks in the kitchen and bathrooms so he doesn’t have to turn sideways for access.
- Better lighting in the bathroom.
They also expressed frustration about previous apartments. They were told by landlords that they could add in a roll in shower into their place as a reasonable accommodation; however, when they left they’d have to take it out and replace the fixture that was there. That’s not financially feasible for them, nor most people, for that matter. Mike opted against having a functional shower to eliminate the need for a construction project.
Trying To Be “Normal”
Dana mentioned that she fought hard to not have their life look “different,” which included their transportation. Once she got a taste of successfully transferring Mike into her own vehicle, she was excited to sell his old van. However, after she hurt her back moving some furniture, they had to go back to using a wheelchair accessible van.
Dana: I think I spent those early years of our marriage really fighting against anything that was special. I just hated it. Anything that looked special or looked like it had anything to do with a hospital… or like, basically the only thing I was willing to tolerate was like the actual wheelchair. Other than that I was like, “I’ll do it! You don’t need this!”
Community Involvement
Mike: Sometimes I just don’t… There have been times when it’s not worth it. I really do rely on either there being some infrastructure [the physical place] that enables me to get about my community, or I rely very much on a community of people who are available to be my bridge to help me, come by and pick me up, toss me in their car, or drive my vehicle. People who are available to go do things with. Fortunately this area is extremely accessible. I can go from here to the metro stop in minutes and I can be in downtown DC and be at a conference in a half hour, and it’s wonderful!
This is essential for Mike to feel more independent and help with errands. However, as they’re woking to grow their family, they will need to move away from this area to a home with more space in their price range. This may significantly decrease his ability to easily get from place to place.
Visiting Other Homes and Traveling
They also discuss the desire to easily be able to go over to other people’s homes. It’s difficult to hang out with friends or family unless they meet in a public location, or unless they host. It’s just a lot of work.
I love Dana’s step-by-step thought process. This is what she thinks about when trying to be a part of a church group that meets in someone’s home.
Dana: You know you’re typically stepping out of your comfort zone anyway going to someone’s house you don’t know, and then it’s like for me thinking about the drama that is involved in like…
Are we going to have to pick him up out of the… somebody’s gonna have to hold him and carry him, somebody’s gonna have to hold the door. Now we’re gonna have everyone that’s inside having dinner is going to have to stop what they’re doing, come up here, make a scene… he may or may not be dropped. Right?
In that for me, my anxiety level just goes up. And then after he’s in the door then it’s like okay, alright, he can’t get into the bathroom… he can’t get into the kitchen… I need to get his plate… I’ve gotta dadadada… It’s like I finally sit down and I’m like, “Oh hi… hello.” And them I’m thinking about the exit strategy…
Oh we’re gonna leave and it’s getting dark, I don’t know what’s going on with the steps and oh the van is like, I’m gonna have to pull it around. It… so then like we’re not gonna go.
Right, so then we don’t have any friends! So that’s really hard!
If homes were designed so everyone could easily get inside to enjoy each other’s company, this type of step-by-step frustration wouldn’t be a regular issue. They could just go. Housing accessibility can be a huge barrier to building meaningful relationships with others and feeling welcome in a community.
Dana: Other people’s housing is a big deal! You know like, visiting family, going on family vacations, you know with the rest of our people. Just being able to get in and out of places, that would be a really big game changer for us.
They’ve also experienced reservations for a timeshare or a hotel being changed without notice. As you might imagine, this is extremely frustrating when the features of an accessible room (e.g., a roll in shower, no steps to enter) are needed to relax and enjoy time away from home. This is more than an inconvenience.
It’s much easier to use what they have set up in their own home because they’re in control. Mike doesn’t want to sound like they’re obsessive or control freaks, but they want to be comfortable and not deal with extra frustrations.
Don’t forget Dana!
At one point in the interview, both Mike and Dana share examples of when people focus so much on him, that Dana feels ignored or judged.
- Mike likes to open the door for Dana when they go places, and people look at her like she’s rude by not assisting him with the door.
- People will open doors for Mike, and then not hold it for Dana who is following behind (with his stuff and her stuff). She’s had the door slam in her face before.
- They’ll go to church and people will just talk to him and not acknowledge Dana…
Mike: “At one point we literally stopped attending church because it was so painful for Dana. She had been attending the church for years, and so here comes Dana and husband, and everybody…. “Oh Michael! Hi how are you?”
Dana: “Talking loud.” [Indicating that sometimes people talk in a loud voice to people in wheelchairs when their hearing is fine.]
Mike: “Dana is back here and everything’s all Michael and people are shoving stuff to Dana… it’s like oh here’s his this here’s his…
Dana: “… the bulletin and stuff for him, and I want coffee too!”
Dana says they have since worked through all that, but still it’s important to remember that the entire family unit is affected by the situation in some way and not to forget the person who often does a lot of things behind the scenes.
You May Be Surprised To Know…
Time: It takes people with spinal cord injury awhile to get ready for the day. It’s a process to get out of bed, dressed, bathed, and so on. He has an aide help him get ready 5 days a week while Dana goes to work. It’s a physically exhausting process, but also mentally taxing when you have to educate and specifically verbalize what needs to be done in an effort to make sure things are done correctly. Mike says there’s often times where he’s tired just after getting ready for the day that it’s difficult to have enough energy to put forth 8 hours of work.
Dana adds, “Everything takes so much more time!” It takes her .5 seconds to get out of bed, but for Mike, it could take 2 hours. Even to get into their vehicle… she doesn’t think others realize how long and how much effort is required just to leave the house, get in the van, get seat belts on, and to go. It could take 15 minutes after locking their front door to actually be on the road.
Rain: They don’t do the rain. The process of getting in/out of a vehicle or into a building takes time and they’re “drowned rats” by the time it’s over. They’ve decided it’s often not worth it to brave the elements.
Money: Living with a disability requires more money to take care of needs, and it’s frustrating to know that to make a house functional for you, you may have to put out $30,000 or more to make the changes. Even then, sometimes modifications may only provide access to certain areas of the home and leave the person unable to use the entire home.
Advice for Others
Mike explains, “We want people to be inviting, accommodating, and accepting, but… don’t go overboard!” He says it’s totally okay for you to ask me if I need help with something. Just don’t grab his wheelchair and start pushing him. Also, don’t ask overly private questions when just meeting someone.
Mike has some great advice about building relationships with people affected by disability. For them, physical barriers do prevent others from inviting them over to their home and it’s even more appealing if people ask how they can make it work so they can attend. Being open and communicating with each other is a better way to approach the situation versus not inviting them because you don’t think there’s a solution.
Dana: We’re just like everyone else. We may have the wheelchair thing going on, but we’re married… like everybody else we have to manage our household and our finances… we want to grow our family and we have opinions about things that are going on around us… you know we’re not THAT different.
Mike & Dana desire to build and maintain relationships with others, even though it can be difficult.
Dana also mentioned an experience where a group of people went to a baseball game. She just figured they’d be separated from the group because they needed accessible seats and would just wave at everyone else in the regular seats. It was heartwarming to her to have the organizer actually get the group seats moved to a section near the accessible seats so they could be a part of the group.
“It was really touching to me that he thought about that.”
I’m so thankful for Mike & Dana’s story and insight. I think their many years of experience highlights that our communities have a long way to go in making homes and other opportunities more welcoming for a variety of people. It’s more than not having the physical access. Barriers can have a domino effect that impact people relationally. Thanks Mike & Dana for sharing!
P.S.: If you’d like to share your story, contact me: sarah@universaldesign.org and we can set up a time to talk!
