The dragon who came to lunch

We've been home for a week.  The first few days involved sleep, readjusting to the cold, and writing reports and yes, log frames! In my notebook some writing is barely legible, letters moving up and down the page telling a story of rough tracks, potholes, sharp breaking and speed bumps. I tried to capture everything - people's stories, comments and chat, sermons and speeches, observations... It helps me remember the reality of a visit to Uganda. Some pages have food stains, or smears from tears, smudges of dust, dirt and sweat. But nothing captured the heartache and pain of the people with disability (PWD) at Abeko.

I can't get away from the stories, words leap out from the pages of my notebook, amplified by photographs and memories. The drive to Abeko - almost an hour of rough dust road through endless flat scrubland. The final yards up a narrow path with high bushes and cassava fields on either side. People sheltering from the stifling heat, apart from children looking after cows, or fetching water, some balancing heavy jerry cans bigger than their heads.  

People came to shake our hands as we stepped down from our vehicle, then led us through a low entrance into a mud and wattle building.  Stripped tree branches bent upwards, providing supporting poles for the grass-thatched roof to prevent it sagging.  A large mat was seating for the women and children, the men sat on benches, visitors were given chairs. I sat on the floor with the women, resting my back on the mud wall.

We were there to meet the newly formed Disability Support Group (DSG), and to support them in prioritising the needs of their members.  We divided the group into 2, and gave every single person a chance to speak.  They were each asked to described their biggest problem.  A few days later we went back and summarised the findings, giving the group opportunity to discuss the issues and ways to tackle them.  There are some people I can’t forget. People who walked miles in the heat, or came straight from hospital, delighted that finally they had a voice that would be heard.

Can you imagine having a disability - physical/ sensory/ intellectual – with virtually no free medication, medical consultation or mobility aids, where government schools rarely have adaptations for children with mobility difficulties, or special needs teachers, and no sign language teachers or facilities for blind children? Can you imagine the damage caused to your skin and joints if you can’t walk, don’t have a wheelchair/crutches, and move on your backside on rough hard ground? Oh, and if it rains you haven’t a hope as the ground turns into flooded mud.  The main source of livelihood is agriculture...

I should let them speak for themselves:

-        Children with disabilities need help to feed and bathe and need extra clothing and bedding. If we’re caring for them, we can’t work – so we don’t have money for the things they need. Most children sleep on poor bedding and have a lots of infections and skin sores. If there isn’t enough food, its always the PWD who eats last or has none. 

-        We have no rights – people take our land, our possessions, abuse us, mock us, reject us.

-        My child went to school; he was very bright. Then he was burnt and his face is disfigured and he lost his hand. No-one will greet him and shake his hand. No-one wants to sit next to him and everyone calls him names. He refuses to go to school now.

-        Men don’t want to care for a disabled child, they leave. 

-     I’m disabled. As a man, I have pain in my heart because I can’t provide for my family. 

-        If a family with several children is poor and struggles with fees, you’re not going to send a disabled child to school, other children will be sent first. One young man said, ‘I’m not considered. I was left as a child and nobody thinks of me and education. What am I going to do?’ 

-        How can a PWD get married? No-one wants us, and if they did, a disabled girl’s family are too poor to have cows for the bride price.
-     How can we build houses?  How can we cut logs or climb trees? A blind person can’t build a house. Some can’t lift an axe. We don’t have money to ask someone else to build for us – so we have to live with family or outside.

On our second visit, our brilliant friend Francis encouraged the group to work together to help themselves. He told them ways they could be empowered and said the DSG should find sustainable ways to improve their own society.  As we shared lunch, the group were excited and encouraged, but my notebook says, ‘How do you change the attitudes of families and communities – when will there really be equality and justice?’

So why the dragon? I understand its hard to train a dragon – I think it will be hard to change attitudes and see PWD receive their rights.  And, although its starting to happen, in very rural areas there’s still a massive hurdle to tackle before children with mobility or sensory disorders can access education. 

And the last dragon…. Have a look at this https://www.globalcare.org/2018/01/making-waves-for-disability/ and let us know if you want to be part of Tom’s Dragon Slayer team at the Making Waves For Disability: Fundraising Dragon Boat Regatta on Saturday 30 June 2018.