Tag Archives: disability

Global Strategy to End Clubfoot Disability

CBM has been a founding and governing member of the Global Clubfoot Initiative (GCI), an umbrella organisation of non-governmental organisations involved in clubfoot treatment worldwide. Via GCI, CBM has helped develop a standardised training package for clinicians treating children with clubfoot and a global database of cases treated.

Up to 85% of children born with the condition worldwide are unable to access treatment. CBM has thus collaborated with GCI on the drafting of a Global Strategy to End Clubfoot Disability, which is published today, 3 June 2017,on World Clubfoot Day and the birthday of the late Professor Ignacio Ponseti who pioneered the successful treatment technique. This strategy has prioritised countries in which programmes need to be established and developed, as well as estimating the costs involved in doing so. Under this strategy we hope that, by 2030, 70% of children born with clubfeet in low and middle income countries will have access to the treatment they need in order to walk and run free for the rest of their lives. CBM, via our partners worldwide are already a major provider of clubfoot treatment internationally and intend to take a leading role in the implementation of the global clubfoot strategy published today.

What is clubfoot?

Congenital talipes equino-varus, or clubfoot, is the most common significant musculoskeletal congenital abnormality, affecting between 1 and 2 babies in every thousand live births. The deformity presents as a “twisted” foot, with the sole of the foot turned upwards and the ankle twisted inwards. The condition is twice as common in boys as in girls and in two thirds of cases both feet are affected.

Without treatment, the child will begin to try to walk on the deformed foot, which with time will become stiff and painful. Also the bones of the foot will secondarily deform making correction more difficult and often only possible by means of extensive and costly surgical procedures. Without correction mobility is impaired, leading to children having difficulty attending school and being unable to participate in the normal activities of childhood.  Normal shoes cannot be worn and as adults employment opportunities are limited.

Clubfoot deformity is entirely correctable by a very inexpensive and simple technique known as the Ponseti method. This involves a weekly manipulation and plaster casting of the foot, which typically corrects over a period of 5-6 weeks. The majority of cases need a minor surgical procedure.

Globally, nearly 200,000 children are born with clubfoot deformity each year and the majority of these are in low and middle income countries where it is difficult for them to access treatment; of those born today only 15% are likely to be corrected, condemning the remainder to lifelong pain and disability. CBM has been in the vanguard of the drive to establish Ponseti based clubfoot treatment programmes across the less developed world.

Via our partners CBM has gone on to set up Ponseti based clubfoot treatment programmes in many of the less developed countries in which we work and as a result we have transformed the lives of children born with this condition. CBM has also been at the forefront of teaching and training local doctors in the specialized surgical techniques necessary to treat older children and adults who present with “neglected” clubfoot.

Disability, Development and Data – The Triple D in the Arab Region

Hosted by the United Nation’s Economic and Social Commission for Western Asia (UN ESCWA), I had the pleasure to represent CBM at the”Expert Group Meeting on the ESCWA Publication entitled Disability in the Arab Region 2017“. This meeting took place on 11th and 12th of April in Beirut and had the objective of making inputs into a publication on the     situation of persons with disabilities in the Arab Region, a publication UN ESCWA is planning to release on December 3rd this year. More specifically, the publication will be looking at the latest developments regarding the 2030 Agenda for Sustainable Development, its linkages to the Convention on the Rights of Persons with Disabilities (CRPD), as well as at models of social protection in the region.

 

My role was to give a global perspective on the linkages between the 2030 Agenda and the CRPD and to present the work that CBM has been doing in that area over the last years. In addition to sharing a number of concrete text changes to the draft publication, I was very pleased to see that     CBM’s work was already quite well known by many participants: The two pieces of work, the infographic on the linkages between the CRPD and the SDGs as well as our publication on sustainable development were often quoted by speakers, in addition to being   brought to the table by me.

 

One session was devoted to the subject of data and statistics on disability. That session highlighted, once again, that there is still a great deal of confusion about what to measure, what methodology to use etc. At the same time, it also clearly brought forward the willingness to work across different countries of the region, in a view to find a harmonised approach and in order to learn from each other.

 

All in all, it struck me that there was a very high turn-out at the meeting of Governmental representatives. This underscores a good degree of political will to further the rights of persons with disabilities in the Arab Region and CBM was often mentioned as a key actor to help make that happen!

 

Let’s “Shape the future” together

Katharina Pförtner, Global Advisor for Inclusive Education and Regional Advisor for Community Based Rehabilitation, based in Nicaragua writes about her experience while participating in the Inclusion International Conference ‘ Shape the Future’ held in Orlando USA in October 2016.

Partially visually impaired After-School Club Coordinator Chethankumar (2nd from right) leads 'Cheering Up', a highly inclusive exercise that gets the children enthusiastic about engaging with one another.

Partially visually impaired After-School Club Coordinator Chethankumar (2nd from right) leads ‘Cheering Up’, a highly inclusive exercise that gets the children enthusiastic about engaging with one another.

The Inclusion International Conference ‘Shape the future‘s’ main goal was to create a Global Resource to support Self Advocates with intellectual and developmental disabilities (I/DD). Under the headline: “Nothing about us without us” around 900 participants from USA and around the globe came together (I met participants from over 24 countries!)

The discussion in the different workshops and presentations was intense and inclusive, Self-advocates were all around, demanding their rights and easy to understand communication. During the Self-Advocates´Summit 80 men and women with intellectual and developmental disabilities met and elaborated their demands and goals to continue working in the future. The meetings were facilitated by 12 self-advocates from different countries. There was a large group of self-advocates who could not participate (mostly because of high costs for travelling, conference as well as logistics fees) and sent their comments and videos online to the coordinating office.

 
One of the central points appearing all over the discussions was: how can we conclusively translate the rights mentioned in the UNCRPD (like the right to participate in the community, vote, live independently, receive inclusive education etc) to something concrete on the ground? how do make sure that “No one with I/DD is left behind”?

 
To do so, first we have to create the following conditions:

  1. Strengthening self-advocates and their organisations around the world
  2. Challenge negative attitudes wherever they appear
  3. Raise the voices of persons with I/DD and publicise their achievements, demands, experiences, etc. and include them in  the international discussion
  4. Collect Data (disaggregated by gender, age, disability) with  regards to health, education, employment, social inclusion
  5. Analyze the situation in justice systems in different countries and publicize instances of  exclusion from justice for persons with I/DD
  6. Include self-advocates in decision-making units, for example Sara Pickard from Wales (a women with Down Syndrome) is part of the community council in Cardiff.

For this empowerment education plays an important role: Inclusion International plans to create “Catalysts for Inclusive Education”, trying to build alliances with other organizations working in this field and coordinate experts for publications and campaigns in order to oppose the latest negative movements calling for revision of the ideas of inclusive education. In my opinion publishing good practice examples is one of the most important steps for all of us ahead.

 
We should all connect our work on the rights of persons with disabilities, including the persons with I/DD, raise awareness in CBM, partners and alliances, initiate Self-Advocates groups and strengthen them in the different levels of our work. It is important to focus in our activities and discussions on this issue, to make sure that persons with profound I/DD are included in all spheres of life.

 
I would like to share a story which left an impression on me: Ethan Saylor was killed by police officers in a cinema because he did not want to leave; he wanted to watch the movie a second time. He had no ticket. The officers were not able to understand him, he was thrown to the floor and with the three men on his chest, he could not breathe any more. His mother started meetings and campaigning against this injustice which killed her son. She succeeded in initiating a commission where police, justice, self-advocates, parents, politicians discussed much needed changes. This resulted in a training which all police officers will be participating, where self-advocates are included as facilitators.

 
I leave you with some strong statements from participants at the conference:

  • “Normal is boring, who needs to be normal?” “Unboxing” is needed.
  • Independence means different things in different cultures, does not mean to be alone, but to have control about one´s life.
  • Make sure that people matter and their voices are heard. Self-advocacy starts at birth.
  • Legal capacity is not about mental capacity; it is about power over ones decisions, preferences and will.

 

Hurricane Matthew – Green shoots of recovery

This blog piece is written by Katleen Jeanty, a communications consultant working with CBM to cover Hurrican Matthew in the Caribbean.

Three days. That’s how long it took. Three days to fully recover – both physically and emotionally – from what I experienced during my trip to Haiti’s southwestern peninsula, just two weeks after Hurricane Matthew made landfall. I had the honour of accompanying a team from CBM’s Haiti office that went to assess how people with disabilities dealt with the hurricane and determine what were their needs and priorities. As a communications professional, I went along with a photographer to capture and tell their stories.

The category-four hurricane hit the already vulnerable island nation on October 4, 2016, leaving in its wake a trail of devastation not seen in Haiti since the 2010 earthquake. Videos and pictures started circulating on social media almost immediately, showing the sheer power of Mother Nature. Powerful winds mowed down trees, ripped off roofs and lifted entire homes from their foundations. Rivers swelled, swallowing anything and everything in their paths…homes, roads, bridges, trees, livestock, residents.Survivors are left in need of rebuildingtheir lives, from fixing their homes to assuring they have enough food to eat tofinding ways to make a living to take care of their families.

Hurricane Matthew Haiti 2016 Images taken during needs assessment visit to southwestern regions of the country - including Les Cayes and Jérémie - from 16 to 21 October This image shows Alexis Joseph, CBM Accessibility Program Manager and and Katleen Jeanty (Communications), during focus group discussion.

This image shows Alexis Joseph, CBM Accessibility Program Manager and Katleen Jeanty (Communications – on the left), during focus group discussion at a needs assessment visit after Hurricane Matthew struck Haiti.

Although I was nervous in the days leading up to the trip, as I didn’t know what we would see or how I would process the stories we’d hear, stories I knew would be heart-breaking, I couldn’t wait to go. So, I prepared as much as I could and at 6:30 a.m. on Sunday, October 16th, I waited to be picked up to start the estimated seven-hour journey. All along the road, as we got closer to the impacted area, I started looking for signs of destruction. And literally, just like that, about 3.5 hours in, we saw the first set of downed trees and damaged houses – those either missing roofs or completely flattened. But even with all of the pictures and videos we saw, nothing could have prepared us for what awaited us.

As we left the town of Les Cayes and got close to entering the city of Jérémie, our final destination for the day, we were left speechless. Complete devastation. Town after town, it was the same story, damaged trees, buildings and lives.

During our week-long trip, which had to be cut short due to extreme flooding from days of non-stop torrential downpours,we participated in coordination meetings at the Departmental Emergency Operation Centres (COUD), with the Coordinators of the Civil Protection Department (DPC) and the President’s Departmental Representative of the Grand Anse and South departments. During these meetings, we discussed the immediate need for food, water, medicine, corrugated metal and tarp to assist residents in the outskirts now, with long-term needs for economic opportunities, especially for people with disabilities. The most shocking outcome of that meeting was learning that there are areas that have no houses standing and that residents in those have taken to sleeping in graves and caves.

We also met with several Disabled Persons Organisations (DPOs) across the area, traveling at times up to three hours each way to assess their capacities to support their members, and had the opportunity to hear the heart-breaking stories from the members themselves. We also witnessed aid starting to reach some of the affected communities, although not specifically people with disabilities. But with so many hard-to-access villages, it may be weeks before some of these victims see anyone. Nonetheless, we were extremely happy to see several organisations and missionaries on the ground, mobilising to distribute food, provide medical attention and medicine to the sick and injured, as well as home improvement materials for those affected to start boarding up their houses.

Is it enough? Absolutely not! The need down there is enormous and people’s lives are at stake.

Most impressive though? The amount of local Haitians we saw working with these organizations. Again, is it enough? Far from it, but we started and that’s what’s most important! Now to keep it going, especially for those who were most affected.

I’m happy to have been involved in this early work. And I look forward to seeing how CBM, with its partners, ensures that people with disabilities, their families, and other community members are identified and supported to recover from the hurricane.

Finally, again on the bright side, as we left the greater south, we literally saw the shoots of recovery: We noticed that many of the trees that were brown and completely bare from losing their leaves on Sunday when we first got there, have already starting sprouting bright green new baby leaves.

Just a little reminder that there is always hope as long as there is life!

More reading:

Leanie, who works with a local Disabled Person’s Organisation (DPO) in Haiti, lost her house and livelihood during hurricane Matthew. She is matter-of-fact about the situation, saying “I just want to go back to being able to take care of myself”. Read her story here.