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Interview with Alex Galvez about Asociación Transiciones, Para Personas Con Discapacidad

Interview by Stephanie Molloy, PhT

The on-site wheelchair basketball court at Transiciones.

Asociación Transiciones is a Guatemalan organization based in Antigua Guatemala, founded and operated by disabled people, whose goal is to make wheelchairs, prosthetics, and sports available to other disabled people in Guatemala and Latin America. One of the key founders of this association is Alex Galvez, who became a person with a disability 30 years ago when he acquired a spinal cord injury from being shot.

In November I traveled to Antigua, Guatemala and had the honor of meeting Alex Galvez and learning more about the Asociación Transiciones site.

Alex, tell me a bit about yourself and why you founded this organization
I became a person with a disability at age 15, when I was shot and acquired a spinal cord injury. I have lived with paraplegia for 30 years. Unlike most people with disabilities in Guatemala, I had the good fortune to travel to the United States for medical treatment. Over there I not only regained my health – I also witnessed Americans with mobility impairments moving along with their normal lives, working and studying and having families. The main factor making that possible was having an appropriate wheelchair. I was inspired, and on my return to Guatemala I got together with some other young people with disabilities to form an association. We received support from Rotary clubs to receive training on how to make and repair wheelchairs, and then to set up a workshop. At first we just provided mobility for ourselves, but then we began using our skills to help other people who needed wheelchairs. By now Transiciones has been doing that for over 25 years.

Can you talk to me a bit about disability and its stigma within the Guatemalan context?
The 2016 ENDIS national disability survey estimated that 10.2 % of Guatemalans have a disability, and that nearly one-third of households contain someone with a disability. Disability support services are virtually non-existent, and there is no government provision of assistive devices like wheelchairs. Two out of every three people who need a wheelchair in Guatemala do not have one. Not surprisingly, people with disabilities are poorer, have more health problems, and are less likely to go to school or get a job than people without disabilities. We deal with discrimination in the form of physical and economic exclusion, but also because of a social stigma attached to disability. There was a traditional belief in our culture that disability was a punishment for sins, and many families still hide their disabled children away because they consider it an embarrassment or a disgrace. So people with disabilities are often invisible and isolated. If you don’t have mobility, the isolation and exclusion get even worse.
Hard at work assembling a custom wheelchair.

Can you describe the organization in more detail? What exactly do you do and offer? Is your scope limited to Antigua, all of Guatemala, or beyond?
Asociación Transiciones is a disabled people’s organization as well as a provider of services for people with disabilities. Our main activity is making high-quality wheelchairs, personalized for each user, based on their size and their abilities – like the strength of their arms and control of their upper body. And also considering their living conditions - is it a rural area, how much family support do they have, how far will they be traveling in the wheelchair each day? We try to develop the best solution to provide maximum function and independence for each user. Since most of our factory crew are wheelchair users themselves, they understand the importance of having the most appropriate chair for each user. They also provide training to each person on how to make the best use of their wheelchair, how to take care of it, and how to avoid the common health problems that affect wheelchair users. Our other services include a prosthetics and orthotics clinic, wheelchair repair and refurbishment, and provision of other mobility aids like walkers. Each year we provide mobility to about 300 people who have disabilities caused mainly by violence, accidents, diseases like polio or diabetes, and birth conditions like cerebral palsy or spina bifida.

Another important activity is sport. Our staff are high-performance wheelchair basketball players who make up about half of Guatemala’s national team. We just opened our own onsite basketball court so that we can practice more often, and it has paid off – in the recent regional tournament we took first place against the teams from Honduras, El Salvador, Costa Rica and Guatemala City!

We are based in Antigua Guatemala but we provide services for people across the country. Our clients mostly come to see us at our factory, but several times a year we travel to remote areas on wheelchair delivery missions. increasingly we are also serving people who come from neighboring countries like Honduras or El Salvador, where there is no organization like Transiciones providing high-quality wheelchairs.

Where does funding come from? Are staff paid or all volunteers? Where does the equipment and parts come from?
We have 20 Guatemalan staff who are all paid decent salaries, which is unusual in a country where people with disabilities generally can’t get a job or else are underpaid. We occasionally have foreign volunteers, especially to help with fundraising, which is absolutely essential because the people who need our services are overwhelmingly very poor. Most of our funding comes from outside Guatemala in the form of grants from foundations, churches, Rotary clubs, as well as donations from individuals and organizations who have visited us or heard about our work. Our biggest grants have been from Rotary Clubs in Canada. The Guatemalan government provides funds to just a handful of NGOs, but Transiciones is not one of those lucky few. We have a modest but growing stream of income from sales – either to individuals who can afford to pay for a high-quality wheelchair or to sports teams interested in purchasing specialist chairs for basketball or other sports. The equipment that we use for cutting and bending metal, welding, sewing upholstery, etc has been funded from institutional grants and donations. We source most of our components and materials locally, although the supply chain is unreliable and sometimes we have to bring certain components from overseas. Guatemala’s postal system isn’t functioning at present and international shipping is really expensive, so when we hear of someone coming to visit from the US or Canada, we often ask if they would do us the favor of transporting a prosthetic knee joint or some wheelchair castors in their suitcase.

Part of the prosthetics lab.

What were the challenges about starting this organization?
Of course, at the beginning we didn’t realize we were starting an organization that would one day be so large and complex. Maybe if we had realized, we would have been more cautious! The challenges were that we had to learn everything about making wheelchairs and about running an organization, including raising money, developing contacts, managing staff – everything! Also, Antigua Guatemala might be the worst place in the world to be a wheelchair user, because it is a colonial city with cobblestone streets and sidewalk curbs that can be 30cm high.

Were Antigua / the locals supportive at first? Are they supportive now?
We’ve always found supportive friends, since everyone knows there is a great need for wheelchairs. Local people and organizations show their support in lots of ways, from donating cement for our basketball court to giving someone a ride so they can visit us to request a wheelchair. We are also supportive of others in the local community – for example, we just did a favor for the local fire department by welding a broken component on a fire truck. Over more than 25 years we’ve built up a wide network of good relationships with individuals, NGOs, local government agencies and companies.

What benefits have you seen from this organization existing?
The main benefit is that we have provided mobility to many, many people with disabilities who otherwise would be trapped, isolated and suffering from the physical and mental health problems that accompany a lack of mobility. There’s also a great benefit to family members – for example, for hundreds of mothers who no longer develop serious back problems from having to carry their disabled children everywhere, even when the children have grown taller than their mothers. Of course, our staff have had the benefit of employment – and related to that, we also see another benefit for the people with disabilities and their family members who visit us to receive a wheelchair. When they lay eyes on our staff, who are wheelchair users engaged in decent, skilled, honorable, and PAID work, they are amazed. We see their spirits rise, their shoulders lift and their faces brighten as they realize that even in a country like Guatemala, having a disability shouldn’t mean giving up hope. A lot of them ask if we have any job openings – I wish! If we had enough funds we would definitely employ more people, because the need for wheelchairs is huge. And that change in mindset or attitude is a benefit that I think we are bringing to the wider community and the country, as we demonstrate that people with disabilities are responsible, talented, productive citizens like anyone else, and just as worthy of respect and inclusion. Transiciones also participates in national and international advocacy for disability rights and for gun control (since gun violence is the main cause of spinal cord injury here), and our contributions to those movements has been another benefit to the wider society.

The prosthetist helping a patient try out his new legs.

What do you think something like Transitions brings to the concept of Justice in rehab and disability spheres?
Personal mobility is a human right under the UN Convention on the Rights of People with Disabilities (Art20). But if you live in a country like Guatemala you probably have no chance of exercising that right – or other rights that depend on mobility. If you’re a child with spina bifida and no wheelchair, you can’t go to school (Art 24). If you’re an adult with paraplegia and no wheelchair, you can’t look for work (Art 27), live independently (Art 19) or even get to a rehab appointment (Art 26). If Justice means being included in society like anyone else, instead of being excluded and marginalized, then Transiciones is all about Justice!

What are the current challenges this organization is facing?
Our biggest challenge is always economic – raising enough money to keep this big machine operating smoothly. Like other NGOs, we have seen a dramatic increase in the cost of materials and energy since the pandemic, but without a corresponding rise in donor support. We would like to expand and improve our operations – for example, by installing a larger powder-coating oven to triple the throughput of our paint shop, which is a bit of a bottleneck at present. But that will require a significant investment from generous donors. Another challenge I mentioned earlier is difficulty in obtaining some of the materials and components we need. I’m not sure why that is – maybe the Guatemalan market isn’t big enough for providers to keep up a reliable supply.

One issue that we want to address in our organization is gender representation. Our staff are mostly men, because when we first started the association, we were a group of teenage boys with disabilities all living in a house together. Over the years those boys grew up and moved out to have families, but most kept working at Transiciones. But half the people we serve are women and girls, and the ENDIS survey showed that finding a job is even harder for Guatemalan women with disabilities than for their male counterparts. We want to keep developing leaders with disabilities to serve the community, and that of course must include women.

Are there any exciting changes or news coming up in the future?
We are excited about some possibilities during the next year – for example, we’re discussing with partners in El Salvador and Honduras the possibility of supplying wheelchairs regularly to users in those countries. Also, we would love to create an inclusive sports program for children and teens, since a lot of the kids who receive wheelchairs from Transiciones are interested in playing basketball or another sport. Now that we have our own onsite basketball court, I hope we can make that dream come true.

The Transiciones dog, happy to greet everyone who comes by.

Do you have advice for other people, communities, or cities about starting a similar set up?
Well, the main thing is that everything takes longer than you expect. It’s a long road to travel, from having the idea to being able to deliver services in a professional and sustainable way. You need a really clear vision of the type of organization you want to be – but that vision might need to change, depending on the circumstances. You can avoid some pitfalls by doing thorough research to understand the local context – not just the location where you want to work, but also the funding environment, what other services and potential partners exist. Make sure your participants have adequate training and professional skills. Our staff originally gravitated to Transiciones because they have disabilities, but just the fact of having a disability is no longer what qualifies them to work for us. It’s because they are skilled in welding, metalwork and other competencies needed to deliver an excellent service. Another piece of advice is to work within local and international networks and alliances.

What is the most important thing you want people to understand about the organization?
That Guatemalans with disabilities are making a practical difference for other disabled Guatemalans. And that we rely on the support of our friends outside Guatemala to make it happen. We’ve proud of doing good work and setting a good example, being visible and insisting on our rights, without overlooking our responsibilities.

To learn more about Transiciones see their website here: https://transicionesguatemala.org/

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