Vital Signs

You prepare your presentation with care. You spend many hours analysing data, writing reports, and finally packaging the information in an easily absorbed colorful printed summary. You plan workshop activities & write headings for flipcharts, & develop a carefully timed agenda. You ask if you can invite 3 guests. You pack your bags with anticipation and excitement.

The day arrives, and before breakfast, you begin to realise you are completely unprepared. Again! Welcome to a day discussing disability in Uganda...

We're staying in a very nice hotel... Comfy bed, running water, good food, gorgeous views, plenty of birds to entertain my amateur ornithologist husband. But, our rooms are on the 2nd floor & the conference room is on the 1st floor, and there's a steep drive from the hotel reception to our building. One of our invited guests, OT, has a total leg amputation & uses a crutch to walk. We forgot to check about stairs... despite knowing our friend's mobility challenges. Worst of all, inviting him to a day discussing disability. We made sure we have a sign language interpreter for our deaf friend, Simon, but forgot about OT's comfort. The chairs weren't great either. 

That sets the scene. There's a statement disabled people have, "Nothing for us without us." We needed our friends to be with us to help us in our discussions... We should have involved them in the physical planning too. 

We discussed disabled people's rights, & legislation - in the UK & Uganda, & the ECHR. We had a quiz. I got 2 answers right out of 11. Before our first 'break tea' I'd been challenged twice. 

We talked about the Rukungiri project, & the evaluation results. We considered ways we can potentially support children with disability (CWD) to access education, & the kinds of barriers we might face. Then we discussed other Global Care projects for disabled adults & children. It was fantastic to to have OT & Simon there, pointing us in the right direction, questioning some of our ideas, reminding us of the rights and experiences of CWD, telling us what is... and more often what isn't available for people with disability. They brought us practical examples of the reality of their lives as disabled people. We think we have some understanding. We have virtually none. OT described applying for jobs & being rejected for being disabled, the lack of accessibility in buildings, the general attitude of discrimination that sees disability as a sign of worthlessness. I pray I never stop being shocked. 

And what does 'inclusiveness' really mean? Simon gave us a great illustration, & emphasised the importance of accommodation being accessible & appropriate (this includes schools), & the differences between equality & equity. 

We ended the day thinking about how Global Care can be more inclusive of disability in all projects. It was brilliant to hear the love & concern from our local teams, & their desire to understand disability more, & do more for CWD. 

Steve started today by asking us what we'd taken away from yesterday. There was universal agreement that it was a great day, challenging, & shocking at times. We can't thank OT & Simon enough for showing us how much more we have to learn. And how much more there is to do. Tom talked about treating people with love & respect, whatever their circumstances. 'Unconditional positive regard.' The managers' reflections once again highlighted their compassion & love for the vulnerable people who live in their communities. It was emotional... 

'We have a sponsored boy who is deaf. We should invite a sign language interpreter to the Christmas party.' 

'We've always considered the neediest of the needy children, but we didn't think so much about how disabled children are the most needy.' 

'When I see OT & Simon then myself, it is a demonstration of what we heard. Life is changing & we are making a better change (considering CWD).'

'Yesterday was an eye opener. I never thought about the children living amongst us who have disability. We need to look for them. We can see where no one  else is working & that is where we will go.' 

So it was a brilliant yet heartbreaking day. I don't think it would have mattered what we'd prepared. The day was definitely OT & Simon's (and the sign language interpreters).