Fast Facts:
Name: Erik Kondo
Age: 59
Level of Injury: T4/5
Years in Wheelchair: 40
Country: USA, Boston, Massachusetts
Who is Erik?
I grew up here on the East-coast, USA in a typical middle class family and had the same type of upbringing as most people in my situation. At the age of 19, in October 1984, I was in a motorcycle accident and incurred a spinal cord injury
What was your experience of the critical care the first few weeks? What was good, what could have been better?
My injury was a long time ago and lots have change since then in how you treat a spinal cord injury. I had no need for surgery, and my injury was quite stable. Unfortunately I got a pressure sore at the acute care hospital so that extended my rehab a bit, but I was only there for five weeks total, which was a very short time in those days. But to be fair, I was the one who pushed to get out of rehab because I wanted to get back to college, so I wouldn’t miss more. I had already lost one semester due to my accident.
Did the rehab give you enough training to improve your every day life or what did they miss?
No, not at all. I got minimal training, so there was a lot that I still couldn’t do. What helped me was that I used to ski a little bit prior to my injury. And I continued to do that after my injury. Through adaptive skiing I met other people with spinal cord injuries and that taught me a lot. It also made me realize the importance of peer-to-peer support.
After graduating college I moved to Atlanta, Georgia, for work, as a software programmer. I lived down there a few years and later moved back to Boston, Massachusetts, where I currently live with my family.
You said you did not get so much support when you injured yourself. Do you think that it has changed since then?
There is a huge difference now. It is so much easier to get support. I think that social media has made it so much easier to have contact with other people with SCI, even from other countries. So its easier to find inspiration and support than it was in the eighties. I went to London during my college studies. There I really had to learn how to go up and down stairs. I informed the school that I was in a wheelchair user and needed a room that I could access. Of course, I did not get a room on ground-floor. They had an elevator, but that did not always work and besides, it stopped working at 11 PM as we were supposed to sleep by then. So when I got home late, I had to take the stairs. Traveling the London subway was also a challenge, as many stations did not have elevators or escalators. I had to take the stairs there as well. I had to find out which stations and which had the shortest amount of stairs for my exit. Going into the subway was simple, the trick was to get out.
How important do you think it is with peers/role models to both get back to life and keep developing your life?
I think its super important. People, even the health care professionals tend to underestimate the severity of what happens when you get a spinal cord injury. I tell them that there are five major aspects that are affected; Bodily Function, Independence, Community, Sense of Purpose and Identity. Health care professions have a tendency to only focus on the first of these five.
I think the first two are self explanatory, but I can explain the others. For example, Community is my social network, who I hang around with, maybe related to my interests, hobbies or sports. If I can not continue with my sport as I used to do, then I will gradually loose my Community. And maybe parts of my Identity lies in me being an active sportsman. It’s also possible that my sport or hobby gave my my Sense of Purpose. After an injury, we need to find new ways to restore these three. Here is where I think adaptive sports are crucial. It can be a way to get back parts of what people have lost.
Does any organizations in your state or country exist that help injured people to come back to an active life?
Yes, In USA we have two national organizations that deal with SCI, Christopher Reeves foundation and United Spinal Association. There are lot of smaller organizations that focus in providing recreational opportunities.
How does it work with Assistive Technology in USA?
I would say it all depends on your insurance. In theory everyone should get what they need, but it doesn’t work in reality. In America, we have two different government insurances, Medicare – from the Federal government and Medicaid – from the state. These are supposed to help people who can not afford to buy things themselves or who lack Private Pay insurance.
In theory, you should be able to go to an ATP – Assistive Technology Professional in a wheelchair seating clinic who would help you choose the best wheelchair for you. But most times, you are in the hands of the medical industry and the salespersons from the wheelchair manufacturers who have a lot to say about the wheelchair you end up with.
Lets talk about wheelchairs for a moment. I have seen that you have built several wheelchairs in various materials and then published assembly instructions, a Do It Yourself (DIY) guide. Tell us more.
There are several reasons for that. First of all, in developing countries they seldom have the possibility to buy the more advanced wheelchairs that we have in our countries. They are just too expensive. My point is to show how you can build functioning wheelchairs with materials that you more or less can find in general hardware stores.
The other reason is that I think that the wheelchair industry tries to push the high-end wheelchairs on the market as the only solution, which gives them higher profits. I think the market for wheelchairs is dysfunctional as compare with to bicycles. You can buy a bike in any price-range, and there are lots of models to choose from. They are easy to get fixed if they breakdown. For wheelchairs, you basically have two options, the ultra cheap transportation wheelchairs that we see on hospitals, or the high-end ones that cost around 10.000 USD. If they break down, they have a tendency to NOT get repaired, but to be replaced. It’s what I call single-use wheelchairs. It makes for more profit for the industry. But it is not sustainable, and could be very costly for the wheelchair user, if they do not have insurance that covers the entire cost of it.
The wheelchair industry pushes for the most profitable wheelchairs, not the most usable ones. Here in USA, they push for a lot of extras to add on to the wheelchair which drives up the price. The problem in our market is also that most people get a new wheelchair once every five years, and even if something drastically doesn’t fit, they are stuck in what they have ordered.
In addition, wheelchair users are commonly told that they will get fat, so they are pushed for getting a much wider wheelchair then that actually need. Compare that to a clothing store, if you try on a dress that you fit into, they would never say that you should get another that is two sizes bigger, because you will get fat, and then you will not fit into it. That would never happen. The result is that many people use wheelchairs that are not fitted for them properly. The consequence is that they do not have the seating support they should from the wheelchair, and there are negative long term effects on their shoulders with too wide wheelchairs, as well as reduced mobility.
You did not only build these wheelchairs to show that anyone can build them, in the summer/fall you actually performed six marathons in six days, rolling your different DIY wheelchairs at each race. That is really impressive, but why?
I wanted to show that you actually do not need a high-end wheelchair for a 5K, or 10k, or to roll a marathon. The ones that I made cost a fraction of an expensive wheelchair, but still can function fine for a marathon. So I rolled each marathon with a different DIY wheelchair setup to prove that point.
What is the next step for these DIY wheelchairs?
I am looking into creating a wheelchair parts supply chain. The expensive parts are the wheels, the casters, brakes and the axle. I have found great suppliers in China, but I need to figure out how it can be packed or transported directly from my supplier to the customer. Some people are skeptical and think that products from China are always lower quality. That´s not true, you just need to find the right manufacturer. And where do you think the wheelchair manufacturers get some of their parts from anyway? China.
What do you hope to achieve with this? It’s obvious you do not do this to make money.
Again, its a twofold mission. For the developing countries, it’s a way for them to get a hold of wheelchairs that actually work and are affordable. But if we can get a DIY Wheelchair Movement going in US and Europe, where people start to build there own functional wheelchairs, the Legacy Wheelchair Industry will need to rethink their current monopolistic pricing strategy and reduce their prices, or come up with some mid-range wheelchairs models that more people without insurance can afford.
Before we finish this interview, I just need to ask you about electrical skateboards. I have seen you experiment with riding electrical skateboards with your wheelchair. Its looks dangerous, but also lots of fun.
Yes, it was lots of fun, and a recreation where personal protective equipment is highly recommended. But I have a deeper purpose than just having fun. One of the most important skills when you are a manual wheelchair user is balance. We need to practice our balance, as it helps us overcoming physical obstacles when we are out rolling in our wheelchairs. Static balancing on two wheels is a great start, but to make it more fun and take it to a higher level, we need something else. Wheelchair electrical skateboarding is a great and fun tool for developing balance and coordination.
If you want a deeper look into both Erik’s DIY wheelchairs and other DIY assistive technologies you can find it here.
Artikeln är tidigare publicerad i Magasinet Kick 2025 (på svenska).
The article was previously published in Magasinet Kick 2025 (in Swedish).