Today is my last day working at CHANGE and I will soon be heading back home to Jordan to start a family and a new work experience. On this last day and as the year is ending I find myself reflecting on what these past 9 months at CHANGE have taught me and how they have changed me.
When I started working at CHANGE, and coming from a human rights activist background, I had never co-worked with a person with a learning disability before and I had generally never worked intensively with people with learning disabilities before. Working at CHANGE means that you are constantly in close interaction and discussions with people with learning disabilities, and during my first weeks here I felt very nervous because I didn’t want to offend anybody by accidentally saying the wrong thing. I was also worried about sounding patronising or treating anyone like a child. So, every day when I would go back home I would tell myself to just be myself, treat everyone with respect, treat everyone equally.
But, I realised there was more to it than that. As time went by and I spent more time working with my co-worker I realised that treating people with learning disabilities as equals and peers meant making sure to ALWAYS involve people with learning disabilities when designing and preparing for ANY activity or event on issues related to people with learning disabilities. People with learning disabilities truly are the experts and it is from them that we need to learn. No amount of work experience or scientific research by a person without a learning disability could match the expertise that a person with a learning disability has. It’s as simple as that. MEANINGFUL involvement takes time and effort. Through working with Shaun I have learnt that I continuously needed to take a step back and question my perceived knowledge or understanding of an issue related to people with learning disabilities. I needed to question my own power and have the humility to learn and hear from the real expert, Shaun. I learnt that anything less would mean that I would be doing what I feared most –disrespecting and patronising people with learning disabilities.
Another thing that I learnt about treating people with learning disabilities as equals and peers was that I had to take responsibility for adjusting my communication skills to their unique and specific needs and that making information accessible was not just something to do when I had extra time on my hands. I had to take the time to do it. And it wasn’t always easy. But then my co-worker, Shaun, told me that he and the Words to Pictures Team at CHANGE can help me make things accessible for him and for other people with learning disabilities, as they are the experts and are CHANGE’s point of reference on accessible information. So, that’s what I did! Not only did I learn so much from Shaun and the Words to Pictures Team about how to make information into easy read, but I also found myself thinking why doesn’t everyone working on the rights of people with learning disabilities work like this? After all it makes sense to have people with learning disabilities lead the way on issues related to people with learning disabilities. It should be as simple as that and that’s the way things are done at CHANGE.
During the time I have been here I have learnt to always challenge what I think is the right way of doing things. Whenever a person with a learning disability did not understand what I was saying, my initial reaction was to feel frustrated and impatient and all I would do was to repeat myself over and over again. But, what I have learnt is that what I should do is change the way I am explaining something and to keep trying different ways until my message becomes accessible. I have also learnt that it is so important to take the time to achieve HIGH QUALITY accessibility in all forms and to have people with learning disabilities check and test that quality. This is how things are done at CHANGE.
If they are not done this way, without meaningful involvement and accessibility, then any talk about empowering and meaningfully engaging people with learning disabilities is just that; talk.
Looking back at these past 9 months, and while there is still much to be done, I realise how many connections, relationships and bridges we at CHANGE have established. We have worked in partnership with amazing organisations such as NHS England, CQC, and Lumos to create big changes for people with learning disabilities on a strategic level. We have also connected with 36 fantastic self advocacy groups all around as well as running focus groups and workshops with the aim of reducing health inequalities and empowering people with learning disabilities to have a true and meaningful voice to change things. One way in which people with learning disabilities were empowered was through other people with learning disabilities offering peer to peer support and serving as role models to their peers. It is such achievements that are so valuable yet so under-publicised through social media. One group has recently said of CHANGE’s work: “We’ve still got far to go but with individuals and organisations like yours it seems like we just might achieve the CHANGE we desperately need, in our lifetime”.
I believe that positive change is happening, not only in the UK but in other countries as well- such as in my home country and it is people with learning disabilities that are the key to a better future for people with learning disabilities. Through CHANGE I have seen people with learning disabilities take their power as professional trainers, public speakers, facilitators, and individuals with the power to speak their mind and assert their opinions and voices on issues they deem as important. They have never ceased to amaze and inspire me and for this I would like to thank each and every member of CHANGE. I now leave CHANGE empowered and ready to serve and work with people with disabilities in my country and to share with them everything I have learnt here.