Friday, December 4, 2009

International Day of Persons with Disabilities

I meant to post this article yesterday, December 3rd, 2009. Unfortunately, we haven't had internet access for most of the last 3 days. Sorry for the delay.

Today (Dec. 3rd) is the International Day of Persons with Disabilities. The one day every year set aside to promote an understanding of disability issues and to promote disability rights on an international scale. This year’s theme is Disability and the Millennium Development Goals (MDGs).

The Millennium Development Goals (MDGs) were established by the UN and its partners in the year 2000, in an effort to drastically reduce extreme poverty and to improve living conditions for the world’s poorest and most vulnerable groups. They include 8 goals with the target completion date of 2015.

The Millennium Development Goals are:
1. Eradicate extreme poverty and hunger
2. Achieve universal primary education
3. Promote gender equality and empower women
4. Reduce child mortality
5. Improve maternal health
6. Combat HIV/AIDS, malaria and other diseases
7. Ensure environmental sustainability
8. Develop a global partnership for development

The debate about disability and the MDGs is essentially one about inclusive development. If we are going to truly promote and respect the rights of people with disabilities around the world, they must be included in mainstream development programs. In order to have inclusive societies, we must have inclusive development. But beyond that, with the MDGs focus on the poorest and most vulnerable groups, we simply cannot meet the Millennium Development Goals if we do not address the needs of people with disabilities. People with disabilities make up 10% of the world’s population, but they make up 20% of the world’s poorest people. And therein lies the problem – Despite being a significant portion of the world’s poor, marginalized and vulnerable, there is no mention of disability or inclusive development anywhere in the MDGs, or in its related texts. And, although the MDGs are currently being rewritten, almost 10 years later and in a “more enlightened time”, there is still no mention of disability being written into the new text.

Here are my thoughts on a few of the goals in which the exclusion of disability is most obvious and detrimental (to the achievement of the goals):

1 Eradicate extreme poverty and hunger
Target 1: Halve, between 1990 and 2015, the proportion of people whose income is less than $1 a day
Target 2: Achieve full and productive employment and decent work for all, including women and young people
Target 3: Halve, between 1990 and 2015, the proportion of people who suffer from hunger

With people with disabilities making up 20% of the world’s poorest, and with unemployment rates of adults with disabilities over 80% in many countries, it’s hard to imagine how we can eradicate extreme poverty and hunger if we don’t address disability and disability-specific needs. Also, families of children (and adults) with disabilities tend to be poorer, as disability can be a vicious cycle: lower-income groups are more likely to be affected by disability and disability often leads to further impoverishment (due to lack of adequate supports). For example, with the kids we work with in Peru, one parent needs to stay home to care for the child with a disability, meaning the family has a lower income. Therapies and assistive devices are also VERY costly (when they are available at all), so those families who can access these things once again suffer additional financial stresses and setbacks. Really, looking at it this way, it is not surprising that 90% of the kids with disabilities in developing countries won’t receive the services or supports they need – and yet without these they will certainly become the next generation of impoverished adults.

2. Achieve universal primary education
Target 1: Ensure that, by 2015, children everywhere, boys and girls alike, will be able to complete a full course of primary schooling

Ok, this one hits particularly close to home for me, since I do work with children with disabilities. And, of course, it’s obvious that you need to include the 10% of kids around the world that have disabilities if you want to achieve universal education. But I see some additional problem here with the statistics. Recent stats suggest that between 75 and 150 million children around the world are not in school. Yet, there are over 250 million children with disabilities in developing countries, and 90% of them (or 225 million!) are not in school...hmmmm....Are these kids not included in the first statistics? I certainly need to look into where these statistics come from (once again). I know they are both approximations that are quoted often and that such statistics are problematic, but is nobody else picking up on this incongruity?

Another important issue for me with regards to education is quality vs. quantity. The measure of progress towards this goal includes levels of enrolment in primary school as well as literacy rate. I would suggest that the emphasis should be put on literacy rate and similar measures, as oppose to enrolment. This is because there is, in fact, a significant push towards inclusion happening around the world; the inclusion of girls, minorities, children with disabilities, etc. in mainstream schools. However, as I have seen here in Peru, increasing the quantity of children in school often comes at the cost of decreasing the quality of education. In terms of children with disabilities (in Peru), indeed many more children are now included in mainstream schools. There is a relatively new inclusion program that has been fervently pushed forward in the last few years. However, the program does not have the needed resources behind it to make it work. So, while there are now more children with disabilities in school, most of them are simply occupying a seat and aren’t learning a thing. They may be more or less well integrated socially (depending on the school), but the teachers have no idea what to do with them and they have no support whatsoever. In fact, some of these kids were previously in special-education schools and were actually getting a better education.

Lastly, I believe it’s important to note that there are certain groups (within the disability gamut) that are not yet benefiting from the push towards "Education for all". For example, while the numbers of children with intellectual disabilities and autism spectrum disorders in schools has increased steadily in the last 5 years, I’ve seen no similar increase in the number of kids with physical disabilities such as Cerebral Palsy going to school. In fact, most special education schools have few (if any) children with Cerebral Palsy (CP) in attendance, and I’ve yet to see a child with CP included in a regular primary school (in Peru), despite the fact that I know MANY bright kids with CP.

3. Reduce child mortality
Target 1: Reduce by two thirds, between 1990 and 2015, the under-five mortality rate
In 1990, when the MDGs were established, the under-five mortality was about 10%, with most deaths occurring in developing countries. This number has already been significantly reduced and 17 years later (in 2007) the rate was down one third to approximately 6.7%. As you can see, however, if we are to decrease this original number by two thirds by 2015, we have a little over 5 years to reduce by half the under-five mortality rate around the world. Once again, I think we must address the health and mortality rates of children with disabilities in order to meet this goal. This is yet another area where statistics related to disability are lacking or incongruent, but what is certain is that children with disabilities in developing countries have a disproportionately high (and likely shockingly so) mortality rate. In fact, some studies indicate that under-five mortality rates for children with disabilities may be as high as 80% in some areas.


All that said, I think it is quite clear that, while reaching the Millennium Development Goals will in-and-of-itself reduce the prevalence of disability (since reducing poverty, improving child and maternal health and addressing HIV/AIDS and other diseases should lead to a decrease in disability), it is also true that we cannot reach the MDGs if we do not include and address the needs of people with disabilities. After all, these goals are aimed to improve the lives of the world’s poorest people, the most marginalized and most vulnerable, and people with disabilities certainly form a disproportionately large part of these groups.

Here's an example: I recently read the story of a young boy named Jaron, who lives in India but who is very representative of many vulnerable, marginalized and poor children with disabilities around the world. His story, as told by Sarah at Sarah’s Covenant Homes, is heartbreaking but is one that happens more often than any of us would like to think. I know that I have seen it too many times.

Jaron is an 8 year old Indian boy who (apparently) has Cerebral Palsy. He has just come into the custody of Sarah Rebbavarapu, who runs homes for abandoned children with special needs in India. Prior to coming into Sarah’s custody, Jaron spent 6 months in a hospital while the police investigated his abandonment. Now, first of all there is the fact that Jaron was abandoned, something that is all too common for kids with disabilities (in developing countries). But let’s consider the fact that he spent 6 months in a hospital and yet at 8 years old he is severely malnourished (he weighs less than 11 kg, which is the weight of a typical 18 month old!), he had diarrhea and a head full of lice and has bed sores. He seems to be a bright boy, but is miserable for obvious reasons.

Jaron (left, age 8) next to Victora (age 5)

And just how common are kids like Jaron? Once again, we don’t have any really good indicators, but it is certainly higher than most people think or would like to admit. In the 2 years since she began Sarah's Covenant Homes, for example, Sarah has taken in over 80 abandoned children with disabilities, all of whom were living in government orphanages or hospitals in the area and the majority of whom were in very, very poor health (and, of course, were not were attending school, receiving therapy, etc). Indeed, several of the children she was meant to care for passed away before they came under her care, and a few more passed away shortly afterwards, due to their poor condition and related complications.

Tell me, how many other kids are out there dying in homes or hospitals because they are not on anyone’s “agenda”? And how can we possibly put so much money and effort into meeting the Millennium Development Goals without considering the needs of these children, and the adults with disabilities they will grow into? (If they do grow up at all.) These goals were, after all, meant to address the needs of the most vulnerable. How could we possibly not include these children (and adults) when addressing extreme poverty, lack of education and child health?

I see that there is now a movement to have disability included more explicitly in the MDGs. I certainly do hope that happens and that it happens soon. If it doesn’t, I don’t think we can reach the goals and we will have excluded (once again) a significant and important group of individuals from one of the key global development tools of our time...Sometimes not stating or acting is the most damning action of all.

Saturday, November 21, 2009

4th Biannual AAC Conference

Well, it’s over. After much preparation and a very busy week, our 4th Biannual AAC Conference has come to an end. The conference, which was put together to teach local professionals how to help non-verbal individuals to communicate, was held Nov. 2-6, 2009 in Arequipa, Peru. And, although this was our 4th such conference, it differed from our previous conferences in many ways.

First of all, this was actually our smallest conference. Our first AAC conference was held concurrently with a conference about Cerebral Palsy. The two events had a combined attendance of about 400, with around 180 people participating in the AAC conference. Our second conference had over 250 participants (“just” an AAC conference), and our third was our biggest, with over 25 speakers, concurrent sessions and around 550 participants from all over Latin America. So, why go against the grain and do a smaller event this time around? Well, to tell you the truth, after 3 big events and lots of time, effort and money spent trying to promote AAC and to teach others how to implement it (in order to improve the lives of children with disabilities) , we realized that few people had actually put what they learned into practice. After asking why they weren’t using AAC with their students, most people told us that it was such a new and big topic that they just didn’t know where to start. So, with that in mind, we decided to make this year’s event much smaller, more in depth and practical, in hopes of giving participants the confidence necessary to move forward and use these strategies with their students.

We decided to have limited spaces (80 was our ideal number), meant only for those who were really interested in implementing AAC and who were likely put it into practice. In fact, this year’s event was much more of an AAC course than a conference. We kept the name “conference” for continuity sake, but with 3 speakers giving a comprehensive program through one long week, calling it an AAC course would certainly be more appropriate. In the end, we had more interest than we expected. So, even though we had to turn many participants away, we still had over 120 participants with us throughout the week.

Our speakers for the week were Lynnette Norris, Nora Rothschild and Paul Marshall, all from Canada and all of whom had spoken at 2 of our previous 3 conferences. They put together a wonderful, comprehensive “course” – a “how to” of Augmentative Communication you could say. Nora and Lynnette are both known internationally for their experience and dedication to the field of AAC. They also both happen to be excellent teachers. Paul is himself an AAC user, and as such has much more experience and knowledge about AAC than any of us could ever have. He is also wise, funny and charming and has a way of opening people’s minds to the possibilities for people with disabilities.

It was a 5 day event and the days were long. We started at 8 am and normally finished between 6 and 6:30 pm. And, would you believe, despite these long days, participants were there, eager and attentive and sometimes didn’t even want to take their breaks. I’m not kidding! One day, while the teams were doing some group work, we told everyone they needed to go for their break, as the coffee was getting cold. There was a loud “AAAWWWW!” throughout the room and when we jokingly said we could bring the coffee to them, there were actually cheers.

Another important change this time around, as I mentioned, was that all of the participants were divided into teams (groups) and there was a lot of practical work throughout the week. Each group had a “student”, a child they met via video, who would be their “case study” throughout the week. Participants learned to assess, gather information, plan, to chose strategies and make materials, using examples we went through as a large group and then by going through the same steps for their own student. I think this made all the difference in this conference and people really seemed to “get it”. On the last day of the conference, groups had to present their work for the week, telling us about what goals they had set for their student and why they had chosen those goals, and also showing us the materials and strategies they would use to accomplish those goals. We were extremely impressed with the work of the participants. They made some wonderful materials (communication boards, stories with symbols and even a headpointer!), most of which were donated to the students at the end of the week.

The week ended with a very simple but moving closing ceremony. We had such a great group of participants, who had really been touched by what they had learned, that they were giving us thanks and gifts at the end. As usual, Paul was the star of the show and everyone wanted their picture with him…I really wish I had pictures to share of everyone lined up to kiss him and say thanks and have their picture taken with him. I got particularly choked up and could barely say thanks myself. So thanks Paul! And thanks Nora and Lynnette! I know I’ve said it before but I really can’t say it enough.

Now, we’re anxious to see what participants will do with their newfound knowledge. There are thousands and thousands of children around Peru who are unable to speak because of any number of disabilities, and as of yet, they all remain silent (okay, all but a very few). We really, REALLY hope to see more people working with them and helping them to communicate, so that the world will open to them, and they can open up to the world. Time will tell. I feel good about things though. I’m quite sure there is a good group, many people I got to know and could pick out right now, that will try and implement these strategies and help these kids communicate. And, the great thing is that now that we are in Arequipa, we will be continuing to work with many of the groups present and we hope to mentor them and support them on their beginning AAC journey.

We will be keeping track of participants, and we’ll let you know how it goes!

Oh yes, and there are more picture on our Facebook page ( for anyone interested.

Saturday, August 1, 2009


I’m often asked why I/we work with kids with disabilities in developing countries. “There is so much work to be done in Canada (regarding disability)”, or “There are so many other problems to address in developing countries”, they say. Of course, they are right and both points are valid ones. But, these statements also highlight the fact that most people aren’t aware of the issues surrounding kids with disabilities in developing countries. That’s why it’s become part of my job and our mission to increase awareness and understanding of this hidden reality.

Let’s start with some related statistics that you’ll often come across:
  • There are approximately 200 million children with disabilities currently living in developing nations (that’s roughly 80% of all kids with disabilities in the world).
  • Of these, an estimated 95% will never go to school.
  • Approximately 95% will never receive any kind of rehabilitative services or assistive devices (like wheelchairs, hearing aids, walkers, etc.)
  • Children with disabilities are considerably more likely to suffer all kinds of abuse and neglect than their age-related peers.
  • Mortality rates of children with disabilities can be as high as 80% even in countries where overall under-five mortality is below 20%.

These statistics are very telling and very startling. Any person with a disability (or anyone who works or lives with a person with a disability) can imagine just how difficult life would be with no assistive devices, no therapy, no support services and no school. The high mortality rate as well as the increased rates of abuse and neglect are still poorly documented and rarely recognized, yet they point to an urgent problem that requires our immediate attention. The truth is, we don’t have hard facts or statistics about the amount of abuse and neglect that occurs, and this often makes the problem seem unimportant or even non-existent. But I can tell you that the problem is very real. I’d go so far as to say that it’s at epidemic proportions, occurring much more often than other issues that receive much more attention (and a lot more support and funds). So, since I can’t offer you hard evidence or statistics to back up this statement (and since statistics are so much less interesting than real stories anyways), below I will introduce you to just a few children I have met over the last few years.

Sara’s mother died in childbirth, so Sonia spent her first few years with her father, who routinely beat her. She then spent several years in an institution before she was returned to her family. When her cousins saw how she was being mistreated they took her in, but soon found they couldn’t care for her and she was again abandoned. Of course, as in most of the developing world , there were no homes (orphanages) prepared to take in a child with a disability.

When we met Jonson, he was 8 years old and had deep scars on his wrists and ankles from being kept tied up with the animals.

Mikel was about 8 when he was found abandoned on the steps of a church. He couldn’t sit up or communicate, and so people assumed he was “severely mentally retarded”, as they still call it here. At the orphanage where he was sent, he was kept in a room (by himself) with the door closed so his crying wouldn’t disturb others, for 2 years. Since everyone thought he was a “vegetable”, they didn’t see a problem with this. Turns out, he’s a very bright boy.

Cristofer was a beautiful and bright boy who loved to hear stories. He was killed (allegedly by his mother) within 5 days of returning to his family, following a stay a paediatric rehab centre.

Marta is 6 and can’t walk. She can barely drag herself a couple of metres across the dirt floor of her home. Her parents are well-meaning and love her dearly, but need to work all day to provide for their family, so she is left alone day after day to fend for herself, with no one to feed her, change her or to talk to her until her parents return around 6:30 in the evening.

Harry was “discovered” in his family home at the age of 21. His parents had left him alone for days. He hadn’t eaten or been changed, cleaned or even changed position, and no one had come to check on him. The last “food” he’d had was a drink of liquor his alcoholic father had given him before he left.

Can you imagine if just one of these cases occurred in Canada, the States, or any other developed country for that matter? In fact, I know that such cases do, on occasion, occur in developed countries and when they happen there is usually a huge outcry (as there should be). The difference is that these things happen many, many, many times a day in developing countries around the world, and no one seems to notice or be particularly concerned. We have no real numbers to say how often it happens, as there has been little-to-no research done to tell us. For the time being, I only have my own experience to share with you, and that of others who have worked in similar circumstances. And, truth-be-told, for every story I tell here I could tell you another dozen like it, just from my own limited experience. I really don’t think it’s that uncommon.

I don’t write this to be fatalistic or sensationalistic. But I have seen the unusual way people with experiences similar to my own speak about what they have seen in hushed voices, as if they don’t want others to know. It seems they don’t want to dwell on the negative, but want to present the positive changes that are happening. And positive changes are happening – I have seen some very positive changes occur in the last 8 years. Nevertheless, I think it is important we begin to speak more clearly and loudly about what still happens every day, many times a day, all around the world. Kids are still suffering. They are still dying and being abused, neglected and abandoned at an alarming rate, not because of their disability but because of lack of information and support.

So, "Why do we do what we do?"

Because these kids really need us. They need someone to step in and help them and their families. They need someone to speak up for them and to tell the world what is happening.
And because these kids aren’t just numbers or cases you (could) hear and see about on TV or on the internet. They are kids we know personally, many of whom we’ve come to love. Perhaps most importantly, we do what we do because it’s really not that difficult to help. These children can be given incredible new opportunities, just by providing their families with a little information and support, perhaps a wheelchair or other assistive devices and access to an education. I’m not saying we’ll change the world and make it all better with a wheelchair or a workshop, but lives can be changed much more easily than you’d think.

SO, given what you now know, I think the question should probably be “How could we NOT do what we do?”- now that, I wouldn't have an answer for.

Wednesday, June 3, 2009

The BIG MOVE - Arequipa, Peru

Well...ahemmmm...I guess it has been over a month, but as things get into a new rhythm I do hope to update more frequently. I wanted to start today with a "short" post about where we are now and how things are developing. Those of you who are familiar with our work know that Equip KIDS was founded in Canada, with projects and an office based in Cusco, Peru. For the last 7 years, Cusco has been our home and our base. What many of you may not know, is that we recently moved. Not only that, but our small Equip KIDS staff (of 3) are now divided..."Divided we will conquer!", that's our new motto. Jorge and Sandra are now based in Arequipa. While I am in Punta Hermosa, on the coast, about 1 hr south of Lima.

The reasons for the move were many. The goal behind Equip KIDS was always to begin to work in Cusco, and then spread our work nationally in Peru and eventually to other countries and areas of the world. We already have a fair bit of experience working in other areas of Peru, as well as in other countries, primarily through workshops and other educational events which we provide. And, over the last 7 years we have held 3 international conferences (on Augmentative and Alternative Communication), as well as inumerable workshops, presentations and awareness campaigns in Cusco. We have seen quite a lot of change I may add (that could and will be a whole other post), but we feel we've plateaued a bit in Cusco - saturated the market so to speak, and that our knowledge and experience can now be best used elsewhere. Add to that the fact that this is a conference year for us (our conferences are biannual), and that we wanted to hold the conference in another city this year, and well, it seemed it was time for a move.

We chose to move to Arequipa, because it is a fair size city where we already have lots of great contacts and where we have seen organizations that are really on the ball. Organizations that, we believe, would genuinely take advantage of our presence there. You see, although we continue to work one on one with children (in particular in our Augmentative and Alternative Communication (AAC) program and in adressing assistive technology needs), our focus has increasingly shifted to educating and supporting others, as well as awareness building and research. By working with organizations that have a greater reach than our own and giving them the tools to do what they do (helping children with disabilities) better, we feel we can have a much greater effect, since we are, after all, such a small group.

So, we now have an office in Arequipa, Peru. Our work there was kicked off this March with our wheelchair distribution (see posts below). We're already working with a few local organizations through our AAC program. After some workshops in introductory AAC, Jorge and Sandra are now mentoring a group of teachers and therapists, working alongside them and offering support so that they can begin to use AAC strategies with their nonverbal students. We've also continued to provide wheelchairs and other assistitive device to children in Arequipa, and continue to have kids from afar coming to pick up chairs they were suppose to receive in March (but who were unable to travel in March, when Eleanore's Project was here). And perhaps most excitingly, we're begining to organize our next big educational event (conference or the like), which will take place in AREQUIPA, in November of this year.

Me, for my part, I am all alone here in little Punta Hermosa, but I have lots to keep me busy and am very excited about all I'm doing. I'm working with a small group of kids here on AAC, as well as taking care of assistive technology needs (that means, getting them appropriate seating, etc.,). I'm also working in the local public school (which, by the way, is amazing and will definitely get it's own post), where several children with disabilities have been included. My hope is to work with the teachers and director of the school and for this to become a "model" school for others to learn from. I'm also working with some other organizations in Lima and the area, teaching AAC strategies to staff and parents. It really is an exciting time, as it seems as things are changing faster here on the coast and people are more open and receptive to some degree. Oh yes, and I can't forget our budding work in research and documentation. We are begining some research projects to gather information, document and publish, regarding the current situation for children with disabilities in Peru (and elsewhere). I think I'm probably most excited about this new direction, as I think the effects will be farther reaching yet and that it will give us the tools we need to make more sweeping changes.

So, in a nutshell, that's where we're at now and what we're up to. We will always be involved in Cusco and will return periodically for workshops and to check up on kids/wheelchairs/work with organizations, etc. We're really pleased with this new direction though and think that these recent changes are really going to bring our work to more kids and will make us more effective and more efficient.

Writing this post, I can think of a dozen other posts I want to make, so here's hoping that as the posts get more frequent, they won't always be so long.

Thanks for "listening" and thanks for your interest...and stay tuned or more soon....REALLY


Tuesday, April 7, 2009

Wheelchair Clinics

Well, it's been almost a month since my last post and the wheelchair clinics went really well. Unfortunately, my laptop decided to stop working before I went to Arequipa, and so I was without a computer and a connections and wasn't able to update while I was in Arequipa. I really would have liked to - it was a wonderful experience to be involved in the wheelchair clinics after many years of not being here for these special events. It was amazing to work with Eleanore's Project and their volunteers and to see them in action. And once again, I'd love to refer you to their blog for a more detailed account of the week.

Jorge speaks to parents about wheelchair use and maintenance during the March wheelchair clinics.
There were a lot of special moments for me that week. I love to meet the children and their families and to hear their stories. I feel like I have a pretty clear picture of what life is really like for these kids and their families, as I've been working here in Peru with families for many years, and I really do understand what a huge difference a wheelchair can make for such families. Without exaggerating, I can say that many kids over the age of about 5 or 6 spend their whole day, and practically their whole lives in bed, because they become too big to be carried. Of course, their are other issues that lead to isolation, namely the shame and embarrassment felt by some families due to cultural beliefs about disability. Nontheless, in many cases, lack of a wheelchair or other mobility aids is the biggest barrier to getting these kids out and about and participating in their communities and families.

The very fact that some of these families came from 12-14 hrs away on an overnight bus, carrying their kids on their backs (some kids as old as 17) shows how much these families value the wheelchairs and that they recognize the huge difference they can make in their lives. In many cases we met children who were extremely excited to get a wheelchair because it meant that they could go to school for the first time. Many of the parents of older children made comments and gave thanks stating the wheelchairs were really going to "save" their backs. It truly was amazing to see them carrying teenagers on their backs, without complaint. And after such a long journey...

Yousef is a teenager...It's not surprising that, until receiving a wheelchair, he never left his bed. On those rare occasions he did go anywhere (like to come 12 hrs to Arequipa to get his wheelchair!), his mother had to carry him on her back. Imagine that!?!?

That's better!

It was also fun to see a couple kids that we have known for years, coming to get a new chair or to get adjustments. And I particularly enjoyed meeting with community workers from the local Community-Based Rehabilitation (CBR) programs and learning more about their recent work. CBR is something I am personally very interested in and we have always worked closely with the CBR programs here. There really is a lot to talk about on that topic, but I'll have to leave it for another post.

Anyways, after a week of long days, we'd seated about 40 children. Eleanore's Project does an amazing job in building specialized seating systems for kids with complex seating needs, and a team of professional and student volunteers can spend hours (sometimes the entire day) making sure a wheelchair is just right for a particular child. There is also quite a lot of education involved: teaching parents about the importance, use and maintenance of the wheelchairs. This year we also had the good fortune of having an OT with considerable experience in feeding and feeding issues with us, so parents who have had a hard time with feeding were given some tips and advice on how to begin to introduce solids. It sounds like a small thing, but when you have a child who is 7 or 8 (and looks like they are 4) and can only take in liquids, learning to eat can be life changing and life giving, to both the kids and their families. And well, after and exciting and eventful week we were left with another dozen or so chairs and other equipment which we will find homes over the next month or so, so the work is not done yet! Each chair and family had an interesting and important story and perhaps at a later date I can share some of them with you.

Miguel (7) and his mom on arrival

Miguel's mom learned how to begin to introduce Miguel to solids.

Miguel after (with the team that worked on his chair)

My time in Arequipa ended with some much needed planning time. First with our partners at Eleanore's Project, as we plotted and planned on how we can make our work together more sustainable and more valuable. Secondly, with my own team: Jorge and Sandra. We've recently moved from Cusco to Arequipa and we have a lot of new projects and ideas on the drawing board. Between working with local organizations, giving workshops, starting to work with local children with communication difficulties (teach Augmentative Communication strategies), planning our next big educational event, and possibly beginning some more formal research, we will have a lot on the go this next year.

That should also mean that I'll have a lot to post here...So...It won't be so long before I post again. Do stay tuned...

Sunday, March 15, 2009

A week of wheelchairs

It`s been a busy week in Lima. I`ve spent much of the week sorting wheelchairs and helping our friends at Eleanore`s Project as they get ready for their first wheelchair clinics in Lima next week.

Eleanore`s Project ( is an NGO from the States with a very similar mission and philosophy to our own. They send specialized pediatric wheelchairs and other such equipment to both Peru and Jordan. Then they travel to the destination site with a group of therapists to properly seats all the children who will receive the equipment. This is particularly important, as many children who need wheelchairs have complex seating needs. They require careful fitting and support in order to maintain the proper posture necessary for preventing deformities and for improving respiration, digestion and circulation. Perhaps most importantly, Eleanore`s Project always include an educational component to their work, teaching parents and local professionals about proper seating and positioning and about the equipment they are receiving.

We`ve had the pleasure of working and partnering with Eleanore`s Project for several years, both through wheelchair clinics and at our AAC conferences, and Eleanore`s family (the founders of Eleanore`s Project) have become dear friends. I`m particularly excited that this year, for the first time since they began doing wheelchair clinics here in Peru, I will be here for the clinics.

This last week the group at Eleanore`s Project, along with professionals of Yancana Huasi (a great centre on the outskirts of Lima) have been organizing, separating and sending off wheelchairs for this coming weeks clinics in Lima. I was there helping and setting aside our chairs to be sent to Arequipa for the wheelchair clinics there the following week. It was a great week and amazing to see just how much could get done with a warehouse full of stacked chairs. I won`t go into all the details here, especially since I wasn`t organized enough to get any photos (I am a novice blogger after all!) and it was a long and eventful week. But, Eleanore`s Project has a great blog ( where they`ve been posting updates and photos from the previous week. I do suggest you check it out, and while you`re at it you might want to read more about this wonderful organization.

One particular hightlight of the week for me was Saturday morning when there was a workshop held for parents of the children receiving chairs next week. A local therapist from Yancana Huasi spoke about wheelchair maintenance, and I got a chance to introduce the parents to the basics of Augmentative and Alternative Communication (AAC). It was really rewarding, as almost all of the parents there have nonverbal children and all were very attentive and interested - even excited about the possibilities of AAC. I`ve rarely seen such eager and interested parents. We're planning some more involved workshops for both the parents and the teachers and therapists at Yuancana Huasi, so there's a chance to make some real changes here.

That's me teaching about 30 parents how to better communicate with their nonverbal children. You can seen some parents brought there kids along too!

Stay tuned next week for updates from the wheelchair clinics, where I`ll be working with parents and their children on introducing AAC strategies.

Hasta pronto!

Thursday, March 12, 2009


Welcome to our blog! My name is Dana and I'm the founder and Executive Director of Equip KIDS International. Equip KIDS is a small development organization working in Peru. We work with children with disabilities, their families and those that support them, in an effort to improve lives, while educating others and promoting human rights. It's exciting and interesting work (to me anyways!) and it's always changing and challenging.

We hope to share our work and experiences in Peru through this blog, and also to discuss general disability and development topics. Feel free to drop by any time and leave your comments. I'd love to hear about other's experiences from around the world.

Hasta pronto!