Tag Archives: disability

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.

Inclusive humanitarian action – Africa leads the way

The 4th Annual International Humanitarian Partnership Conference, organised under the Inter Agency Working Group on Disaster Preparedness for East & Central Africa (IAWG), has just finished in Nairobi. It was a pleasure to attend, and to have the chance to contribute. And it was an inspiration to all who are advocating for meaningful inclusion in humanitarian action.

I embolden the word ‘meaningful’ because I see a difference emerging in the rhetoric at these events. Attendees are now generally aware of the statistics like one billion persons with disabilities worldwide, and the fact that people with disabilities are disproportionately affected in disaster and conflict situations. But now, it seems we are moving on, and really identifying the causes and solutions.

The theme at this year’s conference was ‘Disability and Age Inclusion in Humanitarian Practice: Scaling up progress toward the achievement of Agenda 2030‘. The timing is good: In the last 18 months we’ve seen the adoption of the Sendai Framework for Disaster Risk Reduction (DRR), the release of the related Dhaka Declaration, and the launch of the Charter on Inclusion of Persons with Disabilities in Humanitarian Action. And of course we have the UN Convention on the Rights of Persons with Disabilities which marks 10 of existence this year.

These documents provide the foundations. We are now ready to build, and I saw evidence of this over the last few days.

Many speakers highlighted in their presentations that if we are to achieve inclusion as an end result, then we need to ensure inclusion from the outset. What does this mean? It means that persons with disabilities – usually through Disabled People’s Organisations (DPOs) – must be part of policy-making and planning of humanitarian action. And this should not be simply ‘checkbox attendance’, but should be meaningful (that word again) participation.

There was a real appreciation during the event of the various unique skills and knowledge of the individuals present and of the organisations they represent (from humanitarian organisations, to DPOs, to organisations of older people). So much so that hands shot up at the end when asked who has specialist knowledge to share. One participant neatly described it as ‘organisations helping each other through the baby steps of learning inclusion’.  Call it baby steps or not, I’m sure there will be much networking and cross-learning to come.

A regional working group on inclusion was proposed, and widely seconded.

And there was a general acceptance of the fact that to achieve this ‘first phase’ inclusion, organisations need a smarter hiring process and accessible infrastructure. All good news.

For me, I was delighted to present our new Humanitarian Hands-on Tool, which is still a prototype but well on the way to release. Feedback on this was positive. We are at the point where the basic nuts and bolts guidance is necessary for field workers tasked with inclusive preparedness and response initiatives. Watch this space for this one.

Of course, the need for data disaggregated by disability was raised. This is not an afterthought: It is an ongoing concern across all the 2015 agenda fields, an essential prerequisite if we are to deliver aid that works for everyone.

Lastly, a telling point was when asked who is responsible for ensuring inclusion, we came to the conclusion that we all are.  I look forward to the future.

Read some of the social media buzz as it happened

 

 

CBM’s End the Cycle has a new website!

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Since September 2015 I’ve the great privilege of coordinating the End the Cycle project. End the Cycle is a CBM International programme that promotes the human rights and lived experience of persons with disabilities in low and middle income countries.

Screen shot of new website www.endthecycle.info

Screen shot of new website www.endthecycle.info

Over time, End the Cycle has become known for producing short, high quality and engaging videos that promote the lived experience of a person with disability. Persons with disability from low or middle income countries tell their own in their own words. Over time, the videos have helped bring the perspectives, opinions and contributions of persons with disabilities into meetings, conferences, trainings and awareness raising events all around the world.

In 2016 End the Cycle has taken a big leap forward to help take the resources even further.

On 20 September 2016 End the Cycle launched a brand new website www.endthecycle.info. For the first time, videos and factsheet are now available online in English, French and Spanish and can be directly downloaded from the website.

It’s really exciting seeing some of the most popular End the Cycle videos and factsheets translated into new languages, making it possible for them to be used in even more places around the world. We are planning to add new stories in the months to come: Starting with stories from Jordan.

To learn more about End the Cycle visit www.endthecycle.info