A Time to Reflect … Working at CHANGE. By Nada Heyari.

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.

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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.

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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.

If not now….When?

Yesterday was Human Rights Day. It was also the day we have read about the horrific torture and human rights abuses at Guantanamo Bay. It’s sickening to think how we can inflict such torture and abuse on one other. As a human being I somehow feel horribly connected to both the perpetrators and the victims. I also believe there is a horrifying and devastating connection with how people with learning disabilities are treated in the UK today.

We create situations where people with learning disabilities are rendered powerless and dependent on us and the state. We put people into abusive forgotten environments like assessment and treatment units, care homes and day centres in the false belief that it will help them and us, being here will keep people safe.

How can we hide from our collective power, our collective guilt and our collective compliance with the disempowerment, abuse and denial of people’s basic human rights?

We all know stories of people with learning disabilities who have died, been pinned down, punished, tormented, bullied, mothers with learning disabilities who have lost the right to care for their children, people denied a key to their own room, denied basic choices, what to eat for tea, when to go to bed, when to have a bath, when to go out, the list goes on and on and on.

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There are a different set of rules if you have a learning disability: sexual violence is called an ‘attack’, rape is often not seen as ‘rape’, volunteering is called ’employment’, post traumatic stress is called ‘challenging behaviour’. Your children being taken away from your care is ‘in the best interests of the child’ so grieving traumatised mothers are left to drown and numb their sorrows in cocktails of drink, drugs and often violent relationships with men who abuse and target their fragile and heartbroken state of mind.

We are desensitised but complicit with these human rights abuses and lies.

On the ladder of power, people with learning disabilities are still at the bottom.

We are panicking now, as we slowly realise and acknowledge the services and systems that we have created to keep people with learning disabilities safe are there to contain and hide people, not heal and nurture, to disempower and deny rights, not empower and respect people as equal citizens.

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So what can we do? Neil Crowther recently drew our attention in his blog, to Michael Bach’s idea, that there needs to be a Truth and Reconciliation Commission. Many people with learning disabilities, as well as Nelson Mandela and others, have an amazing capacity for forgiveness, but what do we offer in return? We still offer paternalistic and often patronising solutions. Solutions not led by employed powerful leaders with learning disabilities. Sara Ryan, Connor Sparrowhawk’s mother suggested in her recent blog:’ We have never really moved beyond this perception of learning disabled people as deficient, worthless, burdensome and a problem.’

In my opinion, we urgently need a Truth and Reconciliation Commission, or something similar, because in the words of Desmond Tutu who ran the Truth and Reconciliation Commission in South Africa:

‘The Reconciliation exposes the awfulness, the abuse, the hurt, the truth, because in the end only an honest confrontation with reality can bring healing. Superficial reconciliation can bring only superficial healing’

There needs to be true healing and true and honest sharing of power. In order to do this we must all look at what we have done wrong. We cannot expect forgiveness if we can’t admit we have done anything wrong. How can we move forward if we can’t acknowledge the wrongs of the past and the wrongs in our present?

In Maya Angelou’s poem at Bill Clinton’s first inaugural she said:

‘History, despite its wrenching pain, cannot be unlived, and if faced with courage, need not be lived again’.

I hear people with learning disabilities and their loved ones asking this from us too. An acknowledgement and a seeing of the pain and harm that has been inflicted on the learning disabled community and their loved ones, in order to move forward in a different way. I’m just very worried its not being truly heard.