Day two of Regional Forum - Kathmandu

In what might be the most beautiful conference setting, with perfect weather and incredibly uncomfortable chairs, we began the second day with a presentation by Monsur Ahmed Chowdhury from Bangladesh.  Mr. Chowdhury, who is blind, is a member of the UN Committee on the Rights of Persons with Disabilities.

I did a presentation on the implications of Article XIX for families and providers of services.  I am concerned that so many are concentrating ont he rights aspects of the CRPD, absent an understanding that the rights translate into laws, policies, regulations and services which may be very different than current practice in many countries, especially in the less developed countries in this region of the world.

There were four presentation groups on the panel after my presentation, from Japan, India, Vietnam and Myanmar.  All had good things to say but perhaps the highlight of this trip for me was the presentation by Pramila Baladundaram from India.  She has develop a grass roots empowerment strategy for very poor families who have children with disabilities.  Working with families and neighbors, she combines micro-enterprise development with support for families.  It is a strength based approach, and this quiet dignified woman laid out an approach that has, I think, great potential in the developing world.  I encouraged her to write it up and Inclusion International could disseminate it.  We then broke into groups and discussed the panel, looking at challenges, solutions and ideas to explore. 

Here are some of the ideas, raw transcript, of what the groups came up with during that session:

What does community mean to you?

1)      How do you define community?

a.       Included

b.      Families supported by the community

c.       Living within families

2)      Access to facilities

3)      Acceptance and learning from community: Works both ways-people learn from the community and the community learns from pwd

4)      Teaching and creating awareness

5)      Being part of the community in every possible way – activities, roles, responsibilities

6)      Living with the family until marriage is tradition (Nepal) – so families supporting people with disabilities miss out on a lot of social activities

7)      Communities are constant and regular: e.g. Neighbors provide support

8)      Community is the future-what will be there after the parents

a.       State support needed

9)      Problems: Keeping the children entertained and their safety and protection

a.       Suggestion of peer to peer networks in schools

b.      Provide teachers with training and support-to recognize and intervene in problem areas

c.       Understand abuse in the family: Parent counseling and training

10)   Be aware of both risks and opportunities out in community and in the family

11)   There are multiple ways of interpretation for the term community inclusion

GAPS

12)   How do you prevent violence and abuse – is there a local solution

13)   Need to improve the environment for people with disabilities in communities.

14)   Communities need to realize they also have a responsibility to their fellow citizens with disabilities

15)   Reach out to “All” segments of the community e.g. develop self help groups for sharing support and innovative answers by experienced parents

16)   Helping parents to value their children-focus on strengths as well as needs – focus on ability not disability

17)   Cultures can change-need strategies

18)   Medical personnel not trained in disability issues

19)   Support needed for people with disabilities in dangerous/risky situations

20)   Negative parental views

21)   Government support needs to be increased

22)   No access to sports and recreation

23)   Provide information on risks and potentially dangerous situations for families and professionals.

24)   How do you get rid of barriers in resource poor communities –need replicable strategies

25)   State an “initiative” to involve the entire community

a.       Start small and with concrete actions

26)   How to get government to take action-to cut through delays?

Rolling Blackouts, Unpaved Roads and the Doha Airport

Due to no internet access for a few days I have not posted anything for a few days.  Sitting in Doha airport and hope to stay awake to summarize the last two days of work in Kathmandu.  Some really good stuff, and some huge challenges.  And then there waws the flight to Mt. Everest. Small plane, breathtaking views, chance to get up close and personal with the pilot and co-pilot and, hopefully, some good photos.  Back to you in a day or so.

Why it helps to turn on the electic kettle if you really want tea

Got up just before 4 AM and put water in the kettle for tea, as the coffee is not good at the hotel.  Plugged in the kettle, put the tea bag in the cup and started to check e mail.  When there was no hot water 15 minutes later realized you actually have to turn on the kettle after plugging it in  Am now drinking tea.

Monday was spent in a series of presentations, with people from fifteen countries in the Asia Pacific region of Inclusion International both as presenters and as audience members.  The audience was about 1/3 self advocates, some professionals and the balance being parents and representatives of parent groups.

Klaus Lachwirz the President of Inclusion International gave a good overview of Inclusion International, and the hope of the CRPD.  He explained that when they asked families what they wanted, it boiled down to understanding the implications of the convention, building capacity of countries to support people, networking with other families, raising awareness of the needs and contributions of people with intellectual disabilities and their families and strategies to increase pressure on governments to implement the CRPD.  The quote I took away was "the process of inclusion should be inclusive."  Great phrase.



Nagase Osame, a Council Member, regional representative from the Asia Pacific Region of Inclusion is from Japan and he presented and MC'd  the morning.  He talked briefly about forced sterilization, a practice still prevalent in the region.  He talked about how living in the community is a human right, a sentiment echoed by the self-advocacy panel that followed.  They were members of Inclusion International's Self-Advocacy task force and included David Corner from New Zealand, Mia Farah from Lebanon, Haydee Beckles form Panama, Ciara Evans from the UK and Quincy Mwya from Zambia.  They each gave their thoughts on how to support people being more independent and full participants in society.  Ciara in particular could be hired out to give political stump speeches.  A great speaker.

Connie Lauren-Bowie, Inclusion International's executive director presented the organizations strategy and priority setting process, an open, democratic and inclusive effort.  Well done.  She presented on three articles of the CRPD, Article XII on Legal Capacity, Article XIX on Living and Being Included in the Community and Article XXIV on Inclusive Education.  All three of these will be the subject of Tuesday's meetings.

Mia's mother then spoke about some parents, from four countries, who overcame seemingly impossible odds to better the lives of people with intellectual disability in their countries.  Great stories.

The diversity of how people with disabilities are supported, or not supported, is a wide range in the region from New Zealand, an institution free zone, to speakers from countries where no one had anything positive to say about being the parent of people with disabilities.  That was depressing.

Tim Gadd, the volunteer Inclusion International Treasurer from the UK did a great job of moderating the remainder of the sessions.  He is a born showman.  Some of the presentations were nothing short of outstanding.  United Voice, the self-advocacy group in Malaysia stunned the crowd with its presentation, and the accomplishments they have made.  They were started in the mid 1990's under the wing of the parents association.  They have long since become their own entity with 20 self advocacy groups in Malaysia and 175 active members.  They run a jobs program, and have a grant from the government to explain the self advocacy movement to NGO service providers doing community based rehabilitation!
heard from Chosen Power, the self-advocacy group in Hong Kong.  Another outstanding effort.  Their motto: Advocacy, Liberty, Diversity.  They focus on choice and respect and have many NGOs and companies, if I understand it correctly as partners.  They use performance art-drama, to get across their issues to the public at large, and have performed widely including once in Brazil.  It was great to see, with both Hong Kong and Malaysia, the strength of advisors-helping but not controlling.

VALID, the self-advocacy group from Australia also made a compelling case.  Their motto - Stand Behind, Stand Beside, Stand Before was explained and the support staff with them was our first leadership institute participant from Australia.  It was also nice to see the pairing of a person with intellectual disability and a person with autism who together presented a compelling case for VALID's efforts.

Finally, PARIVARR, the parents association in India presented on a project they are doing on supported decision making.  An important issue in the US and in most of the world as I have seen during my travels.

The evening was a reception and I got to speak with people from a half dozen countries, some I had met before and others who were new to me.  Always interesting.

A good start and a lifetime's worth of work to do here, as everywhere.

Until Tomorrow.

First (Half) Day in Nepal

Greetings from 4,000 feet or so above sea level.  Got to the airport at 1 PM or so-time difference is interesting, hours and minutes different.  First you get off the plane.  Then you wait for a bus as the first buses were filled. Then you go to immigration with all of the forms and they say you must have a photograph to get a visa.  Then you get out of line and go to the photo booth.  They take your picture but will take neither Euros or $.  Then you go to the currency converted and, 18% later, get currency.  Then back to immigration and three different people, sitting next to each other inspect, initial and finally paste a visa into your passport.  Then off to the luggage and a fifteen minute wait.  Then find the hotel driver-easy-but he couldn't find the van.  The ride to the hotel was harrowing.  Traffic laws are, apparently, a suggestion and the crowds are amazing, mostly people on motorcycles and scooters.  Finally arrive at hotel, check in, unpack and prepare for a nap.  The phone rings and we are off to do some tourism and, for the five others I was with, power shopping!  See some photos.


This is my first real experience with developing world poverty and contrasts.  Significant differences, but signs of a middle class.  Incredible small entrepreneurship.  Stores, shops, stalls and sidewalk vendors everywhere.

A long dinner with discussions about the Inclusion International events of the next three days and the day was over.  I met a few self-advocates from New Zealand, Lebanon and Australia.  The guy from Australia was accompanied by a graduate of a NLCDD Leadership Institute (see www.nlcdd.org)  and we plan to get together to chat after the day's events on Monday.

The photos of the Temple that are posted do not begin to show its size and dominance of a market area.  as do street vendors selling everything from food for people to food to feed the pigeons.

Shops of every description circle the Temple, Saw a lot of Monks and made a donation to have them pray for my friends Jim, David and Mary Lou.

Until Monday.

En Route to Regional Forum in Katmandu

Thanksgiving with extended family was quite wonderful.  The day after Thanksgiving my son David drove me to Dulles so I could travel to Katmandu. Anticipating heavy traffic we left very early for a 10 PM flight.  As a result I spend a lovely seven hours at Dulles-and there was essentially no traffic.  I was at least rewarded with an exit row seat.

I am writing this from the Doha airport, where I have a 9 hour layover.  I sprung for a service that included an escort through security and the evening in a very nice lounge.  Several cups of coffee, some lunch (dinner) and a shower later, working on a report and waiting to be tossed out at midnight when I will only have a 4 hour wait for my flight.  Interesting mix of people here.  Men in flowing robes with various types of head covernings, women similarly attired and lots of westerners from various places.  I think I have heard a half-dozen languages in the past two hours.

Until tomorow.

The Alliance for Full Participation Second Conference

In 2005 most of the major disability organizations came together to create the Alliance for Full Participation.  In September of that year nearly 2,000 people gathered in Washington to commit to community inclusion and participation for people with disabilities.  The second gathering was held this past week, and the focus was on employment with a goal of doubling the number of people with intellectual and developmental disabilities who have real jobs by 2015.  It was good, as always to see friends and colleagues, though I was most encouraged when I realized that most of the people there were new to me.  The stories of people who escaped from sheltered workshops were heartening.  Perhaps the most disturbing thing happened during a session masterfully moderated by Frank Sesno, a former CNN correspondent who has a sister with Down syndrome.  Her also moderated the Town Hall in 2005.

One panel was a group of major employers...Bank of America, Lowes and Walgreen's.  They all said the same thing-they hire talent and want to work with the disability community to find that talent.  The audience questions were all social services questions!  Silly questions out of some vocational rehabilitation manual that totally missed the point.  I had hopped for better.

The effort to help people secure meaningful employment need support for the long term.  Hopefully, the Department of Labor will wake up from its decades long stupor and finally help.  We can hope.

Off to Katmandu after thanksgiving for Inclusion International's Regional meeting.  We will continue the focus on Article XIX and see if a country in that region is interested in our efforts.

Travel to Vienna and a small bit of tourism

Got up very early, showered packed and checked out of the hotel.  Walked to the tram stop, adjacent to the hotel and boarded a tram as it arrived.  Quite the feat with a big suitcase, briefcase and a small satchel!

True to form, it was 10 minutes on the tram to the train and I walked to the station, about five minutes from the tram stop.  Not seeing my train posted I found a policeman who spoke English.  Turns out I was at the wrong train station!   He he gave me directions to the main train station, ten minutes away.  Amazing to find so many people on the street before 6 AM.  True to form, the train arrived on time, and I found my car and assigned seat.  The 6:39 to Vienna departed at 6:39.  A long but beautiful ride through the countryside and now no more border checks.  A 20 minute taxi from the train station to the hotel.  Rachel arrived a few hours before I did coming directly from the US, and we had a long relaxed lunch, a two hour stroll and procurement mission for concert tickets, toured the St. Stephens Cathedral and headed back to the hotel.  It is cold here and windy but tomorrow promises to be warmer.  Until later.