If inspiration is the most overused “I” word when it comes to talking about spinal cord injury, independence comes in a close second. And just as what is inspiring for one person may be insipid for another, the dictionary definition of independence is open to interpretation.
In the days after I was paralyzed, I can still remember some medical professional assuring me that despite my C5 vertebra being obliterated, there was a good chance I would eventually be able to live independently. I think that I understood I was paralyzed, but being high as a kite from a potent cocktail of IV drugs, I was totally unaware of what the nurses meant when they kept telling me I was a “quadriplegic.” In my dreams, I pictured my independent life as a quadriplegic having the chiseled upper body of an American Gladiator, swinging from room to room like a graceful gymnast navigating an elaborate set of monkey bars. Of course I was going to be independent! Hell, I was going to be the paralyzed version of the Six Million Dollar Man — rebuilt better than ever before.
Almost 20 years later, my initial vision of independence has not materialized. No monkey bars, no chiseled muscles. I have yet to swing anywhere, much less transfer myself or shower myself alone. I rely on attendants to help me, but I have found independence. It’s very different from how I conceived it before I was injured, and to be honest, it’s very different from how I think most people would conceive it, but it works for me.
For this article I spoke with a handful of fellow quads, all of whom require some degree of personal care assistance, to see how they define independence. How have their definitions changed since their injuries? How do they balance the many components of living independently to find the mix that allows them to live their lives to the fullest?
Forget the Dictionary
Alex Jackson, a C5-6 quad from Charleston, South Carolina, is used to the puzzled looks he gets when he explains his conception of independence to school groups, or even his friends. Many of them get hung up when Jackson, 30, shares that he needs assistance getting bathed and dressed and into his chair in the morning, yet doesn’t hesitate to say he lives independently. It makes perfect sense to him.
“I am totally independent from getting out of the house and driving and going to work and doing whatever else outside of the house. The majority of the time I am on my own and independent,” he says.
Accepting and embracing this disability-community definition of independence requires a major paradigm shift for many. Take Dave Pierson, who was injured in 2011 when he was a software engineer raising a growing family. With all the responsibilities that come with marriage and three young kids, his idea of independence was pretty traditional. “I think before my injury, my idea of independence was just doing everything on my own,” says Pierson, a C6-7 quad. “You don’t want help from anybody.”
Then his injury turned his world upside down. “It felt like I had very little control over anything,” he says. “Your body decides when it wants to go to the bathroom, and there’s definitely a feeling of loss of independence and loss of life in general. You feel like everything is kind of dictated to you by outside factors other than your own.”
Rethinking his ideas on what it is to be independent helped him regain a sense of control of his life. “For me, the definition has changed considerably,” he says. “Now, independence is dictating life rather than life dictating to me. It’s more about doing what I want to do when I want to do it with whatever help I need — and knowing I am able to get that help.”
Pierson’s definition was one of the most succinct among all the people I spoke with, while also coming the closest to summing up what everyone seemed to be saying. But just having a new definition for independence was only one piece of the puzzle. How do people get to their new understandings of independence, and how do the definitions differ for people with different needs? What are the components of quad independence?
Rethinking Attendant Care
For many of the people I spoke with, moving away from family played a big role in figuring out a new independence. Brook McCall sustained a C4 injury during her undergrad studies at University of California, Santa Barbara in 2002. After rehabbing at Craig Hospital, McCall, 37, worried she would never be able to return to her independent college lifestyle. Her family wanted to build her an accessible residence near them, but she rejected their offer. “I didn’t want to get stuck in a small town, and I was worried I’d be there forever,” she says. She eventually moved to San Diego and started hiring attendants. “It was scary, and kind of crazy, but once I got back to school, I started to feel “independent-ish,” she says. “I had attendants, but I was living my life, not my parents’ or someone else’s.”
Reveca Torres, 36, a C5-6 quad and the founder of Backbones, a national SCI organization, also experienced one of the more profound realizations that shaped her ideas on independence when she moved out. “Moving away from my family helped me figure out that I could be independent living alone, without thinking that I had to do everything myself. I needed to learn how to manage the people who were doing things for me, and that I could do all these things with the help of someone,” she says. “The idea that you have to do everything for yourself to be independent is not true.”
While many outsiders might see a quad’s need for caregivers as evidence that they cannot live independently, Torres and others say the key is in shifting your perspective. “I see a caregiver or an assistant not only as a person, but as a tool to do something or to get something done,” she says. “So, I could use a stick to grab something or I could have someone do it for me. It’s just a person is another tool for my independence, and learning how to use them efficiently has been what has made me independent.”
Josh Basile, a C4-5 quad who works as a lawyer in Maryland, uses a different analogy. “I think of caregivers almost as my hands and feet; they are my ability to get to where I need to go. So even though I’m dependent on others, [caregivers] are a part of me and my independence.”
The Balancing Begins
Once you’ve accepted that caregivers are going to be a part of your new independence, the big question becomes just how big a part are they going to play? The lower the level of injury, the trickier it can be to decide when your independence is best served by pushing yourself to try to physically accomplish something versus asking an attendant to do it. On the one hand, a task that seems impossible today may eventually become doable with repetition, but on the other, that repetition takes time — something that is already at a premium as a quad.
A recent return visit to work with an OT highlighted this conundrum for Torres. After almost 20 years without any OT, she was hopeful there’d be new devices that could help her accomplish some specific tasks more independently. As part of the intake evaluation, the OT tasked Torres with taking her shoes and socks off, something she normally gets assistance with.
“I was curious if I could do it after so many years. I was able to do it, which was cool, but at the end of it I was tired,” says Torres. “There’s that fine line of do you have the energy to do it, and if it’s going to take a lot of time, is it worth it? For me it came down to time. My routine in the morning can take anywhere from an hour to two and a half hours, so I’m not going to do something if it’s going to take me an extra 20 minutes.” (See “Improving Time Usage,” below.)
Torres points out that her system for deciding whether it’s worth investing the energy to undertake a difficult task changes when she is alone. As an example, she shared her somewhat complex routine for picking up objects that fall on the floor. “It could take me a couple of minutes or it could take me 10 minutes, but I have to decide, is it worth it to pick that thing up? Do I actually need that right now, or can somebody just pick it up later? It depends on my energy levels. A lot of times it comes down to ‘do I have to do this?’”
Torres’ decisions work for her and her approach to independence, but might not work for others. Less than six years after his injury, Pierson is known among his friends for constantly pushing himself. Like many quads with lower cervical injuries, Pierson can almost taste attendant-free living and hopes that with continued efforts it will become a reality. “I get some help in the mornings and help in the evenings right now,” says Pierson. “But I’m forever trying to work, and I’ve gotten to the point where I don’t need help in the evenings.”
More Than Just Physical
As much as Pierson desires the physical freedom that would come with not having to rely on caregivers, there is another component of his pursuit that he values nearly as much: financial independence. Pierson receives help from his family, but even with that, at one point he says he was spending around $1,500 per month on caregivers. As he has gotten more physically independent, he has been able to reduce that substantially, but he still feels his overall independence being affected. “When you can’t do things yourself, it becomes expensive quite quickly,” he says. “Say for the $700 a month I’m spending on caregiving now, that alone is a reasonable car payment. And $1,500 a month? Now you’re starting to approach rent on a two-bedroom apartment or a really nice car.”
State and federal benefit programs can help ease the financial burden, but for many they bring up more tough decisions about what matters when it comes to independence. Can you feel independent if you are relying on aid? Christian Budney, a C5 quad from Scranton, Pennsylvania, believes you can, but he still made finding work a priority after his injury. Budney, 29, was injured during his senior year in high school in 2006. Post-injury he focused on getting his college degree so he could find work. Just over a year ago he finally started working full time as a social worker at his local Center for Independent Living.
“[Having benefits] helped me during college and when I didn’t have a full-time job. Having that assistance was amazing,” he says. “But personally, working gives me more of a sense of fulfillment, knowing that I’m not reliant on that.”
On his path to fulfillment, Basile prioritized education and finding a job after his injury. He finished his undergraduate studies, got his law degree and now works as a trial lawyer. He says each step has helped him feel more independent and better understand what independence is for him.
Also, along the way he has shifted his conception of independence away from the physical aspects to focus on the mental. “I think in the beginning, I’d say the first four years, independence was probably 70 percent physical, 30 percent mental for me. Then it got to the point where it was like 50/50. And then I started law school and it ended up being 80 percent mental, 20 percent physical.” Basile added that he would like to shift the balance back towards a more even split, but acknowledged that the new balance has helped him feel the most independent he has since his injury. “I’m living a lot more,” he says. “I’m doing a lot more in the community and learning what makes me happy.”
“When you’re not using your body as much, I think it’s natural you tend to think more,” adds Budney. “You have to embrace that and the idea of being independent.”
With all the pieces of their own personal definition of independence in place, even the most confident quads are likely to struggle with second guessing their formula. When almost everyone around you has a different understanding of independence, there can be an unspoken pressure to conform.
As a 13-year-old young woman coming out of her initial rehab, Torres, now 36, distinctly remembers feeling pressure to be as physically independent as possible. “It was like you had to do it for yourself,” she says. “It was good to be ambitious, but it also created this mentality that I had to do all these things for myself and it made me feel like a failure when I didn’t.”
On the flip side, Torres remembers the role a high school teacher’s unwanted pressure played in helping her figure out her independence. At the time, she attended class in a manual chair, even though she was unable to get around independently. She had a power chair but thought it made her look “more disabled.” The teacher told her he wouldn’t hire an assistant to help her just because she was stubbornly refusing to use her power chair.
“I was so mad at him, but then the next year I did start off school using my power chair and it was awesome,” she says. “It was awesome to not have someone around me all the time. Instead of feeling more disabled, I felt less disabled because I was actually doing stuff on my own, getting to class and being where I wanted to be without having to wait around on someone.” (See “The Chair Choice,” below, for more on how choosing between power and manual chairs plays into independence).
It may seem obvious that people from outside the SCI community would create pressure to conform to more traditional ideas on independence, but pressure from inside the disability community can be even harsher. “People in chairs are way, way, way worse than anyone who’s not in a chair in terms of saying stuff to me about my independence that makes me feel really uncomfortable,” says McCall. “They’ll say stuff like, ‘Oh my God, your life must be so hard!’ or compare their situations to mine. I try to laugh and say, ‘No, I’m sure you don’t like your life more than I like mine.’”
Comparing abilities and independence with other quads is common and can also lead to questioning your approach to independence. Budney catches himself comparing his situation to others but tries not to because he knows it is futile. “I’ve never met a C5 that has the exact same injury as me, but it can still be disheartening to see a C5 who’s living on their own, pushing a manual wheelchair,” he says. “That could play a mental game with you and get the best of you.”
Pierson often finds himself comparing his function and independence with others, but he comes back to the same thought. “We’re all different, and no spinal cord injury is created equal, even if it has the same classification. So, at the end of the day, I’m able to relax and accept that my level of independence might not be the same as another C6-7 because we’re actually quite different as far as the amount of function.”
A Personal Definition
Over the years, as Jackson has honed his speeches on quad life for school kids and people with new injuries, he has also been honing his own understanding of independence. Today he can show his audiences how he drives independently, how he uses a camera independently and how he does many more common tasks on his own. He does so with the confidence of someone who has found the right balance of the many components that make up independence. His definition of disability, like his injury, is unique to him, but the approach he used to discover it has more universal application. “I think it’s the same for anyone with a disability or not, you just sort of choose what you think is reasonable for you to do on your own, and don’t necessarily base it on what others are able to do.”
The reality is, there is no right or wrong way to define independence. For many it is always changing and evolving along with their situation and their body. Embracing the evolution and rejecting outside pressures to conform to others’ ideas are critical to getting the most out of your life and being happy.
“Living independently is not going to be what it was prior to this [injury],” says Basile. “You’re not going to be able to do all the things you could’ve done just how you would have done them, but with the right approach and the right support structure, it is possible. It’s just a matter of trying to figure out what that is.”
With 15 years of quad life under her belt, McCall knows both how difficult this can be and how important it is. She has advice for anyone struggling to find their new independence. “I’d just tell them to change their frame of reference. This is obviously unfamiliar, and nothing like how you thought your life was going to be. You have to look at things differently. You just have to be adaptable. It’s totally worth it. You can bemoan your loss of freedom and hit your head against the wall all day or you can start figuring out a new independence.”
Basile put it all in perspective. “I’m so dependent on others, but because of the fact that I have the right support and the mindset, I’m always able to pursue what my mind is interested in pursuing, which makes me feel extremely, extremely lucky,” he says. “Independence is being able to do as many things for yourself as you can, and being able to life the lifestyle that allows you to smile.”
Smart-Tech: The Game Changer
From smart phones to smart homes and a handful of other “smart” inventions, quads have been one of the prime beneficiaries of accessible technology’s rapid rise, and the result is increased freedom. “Texting was literally so difficult for me that I never texted,” says Josh Basile. “But then all of a sudden, iPhones and iPads came out and it changed my independence to access the world.” Improvements in voice recognition software have also made Basile’s work as a lawyer much more manageable. “I use Dragon Legal and I can type as fast as I can speak,” he says.
Basile now manages almost all of his shopping online via Amazon.com, saving him trips to the mall. He bought a condo last year and has set it up so he has maximum independence. “Every single light in my condo, I control,” he says. “I control the thermostat. I control the TV with my voice. The disarming device. There are so many cool things that you can do with technology these days. For a high-level quad, they’re a game changer.”
Brook McCall echoed Basile’s comments, citing her computer as one of the biggest keys to her independence. She is puzzled when she meets other quads who are hesitant to fully embrace what technology has to offer. “I do get pretty frustrated when I meet people with similar injuries and they are unwilling to learn Dragon or they don’t go on the internet because they don’t want to figure it out,” she says. “I don’t know what I’d do without those pieces.”
Improving Time Usage
For a quad, how long it takes to do simple tasks can seem like the enemy of independence. But Sam Sullivan, a C4-5 incomplete quad who overcame depression to become mayor of Vancouver, British Columbia, faced the time problem head on during his rise to prominence:
One day Sullivan woke up with a plan to go to the bank. By the time he got there, it was 3 p.m. and the bank manager was locking the door. “I missed a full day because it took me so long to get myself ready! My God, how can I compete in the world if by the time I get dressed, they’re ready to go home?” So he conducted a detailed time usage analysis. “Everything I did I wrote down how many minutes and how many seconds it took. For example, to put my shoes on, I’d lift my leg up, cross it over, put my sock on, then put my leg down, lift up my other leg, put my sock on, put it down, then lift this leg up again and put my shoe on, and so on. But what if I put my sock and shoe on at the same time? How would that affect my time? I added it up over an 82-year lifespan and found I would save six weeks of life just by making that one change.”
He realized he also needed homemade adaptive devices, things he couldn’t buy in a store, to make life easier and his use of time more efficient. “I had an abdominal belt made to get my quad belly under control,” he says, lifting his shirt and showing a support garment somewhat like workers wear to ease back strain. “And I discovered that when I take these straps and tighten them up fully and I lean over, I pee, and I pee fully. I have a special leg bag with an air bulb on it, and I depress it and it creates suction, so when I pee, it gets sucked into the bulb, and then I depress it again and it will set up another suction. But it takes me about half an hour to do the leaning and the belt and peeing and everything, so it’s a lot of work.” [Excerpted from “Sam Sullivan: Still Reaching,” August 2006 NM].
On his way to becoming mayor of the third largest city in Canada, Sullivan created five nonprofit organizations. The first drew its inspiration from Sullivan’s need for custom-made adaptive devices to improve time efficiency and independence. The Tetra Society of North America, an organization of volunteers who make one-off adaptive devices for people with disabilities, is still active, with 45 chapters across Canada and the United States. For more information, visit www.tetrasociety.org.
The Chair Choice
When it comes to maximizing independence, a quad’s choice between a manual and a power chair might seem like a no brainer. If you can push, you push a manual chair. If you can’t, a power chair is the route to freedom. Right?
If only it were that easy.
With no movement of her arms, Brook McCall seems like an obvious candidate for a power chair. She’s tried them, though, and would beg to differ. “I really do feel like my manual chair has in some ways made me more independent,” she says. McCall, a C4 quad, relies on an attendant to push her around wherever she goes, but points out she would need someone around regardless of her chair choice. She enjoys the increased access of the manual chair’s smaller footprint and says she struggled to navigate in her power chairs. “I felt pretty uncomfortable in my other chairs. People didn’t really see me,” she says. “Two times in the same day somebody called me a dude. People were like, ‘Excuse me sir,’ like they just didn’t see anything but the chair. I was a thing. I wasn’t a person.”
Reveca Torres, a C5-6 quad, shared the same worry about being engulfed by a power chair. She used a manual chair for the first four years after her injury largely for that reason before making the shift to a power chair. She says she felt pressure to stick with the manual chair. “There’s that sense from manual chair users with lower injuries that it’s the worst thing in the world to be a quad and to have to use a power chair,” she says.
Alex Jackson was injured before he was a year old, so he grew up constantly facing the decision between manual and power. A C5 quad, he used a manual chair set up for him to push using only his stronger side until he was around 10. As he grew, he found it limited his independence. “It wasn’t conducive to my independence for me to continue to push one handed that way,” he says. After some time in a power chair he decided it was the way to go. “Power was definitely more user-friendly on my body, just more feasible for accessibility.”
Christian Budney’s chair journey went kind of the opposite way. Coming out of Kessler with a C5 injury, he decided to go with a power chair because he wasn’t able to effectively propel his manual chair. “My problem is my right side is vastly stronger than my left, so I end up doing a lot of circles.”
“I went to power with an idea that I would work myself into a manual,” he says. Eleven years of quad life have changed his perspective. “I think I’ve come to a realization that for my maximum independence, a manual chair isn’t going to be suitable.”
As a C6-7 quad, Dave Pierson spends a good amount of time in both his manual and power chairs. He regularly gets out for long pushes in his manual chair with friends and can be found ripping down some of Portland, Oregon’s, steepest trails in his power chair.
“I look at my chairs as tools to independence,” he says. “I use whatever tool seems to fit the situation the best. If I’m going into an unknown area that includes a lot of hills and areas that I would have a hard time navigating in my manual chair, then I tend to use the power chair. If I’m going to known places that are navigable in a manual chair — any kind of social thing downtown, restaurants, that kind of thing — I would prefer my manual chair because it’s a little easier in big groups of people.”