Finding your tribe

Every now and then you meet someone or a group of people and they have a profound impact on your life. It might be an incidental meeting and you never cross paths again or it might be your best friend. Sometimes it’s an entire group of people which is the case for me in the last few years. There is a saying that goes there are friends for reasons, seasons and lifetimes.

They also say it’s all about being in the right place and the right time. For my family and I, Partners in Policymaking came along at the right time but I felt I was in the wrong place.

My partners tribe

We had spent 5 years in fight mode, expending precious energy on fighting battles in the wrong way. The previous 12 months had been particularly difficult including poor health for everyone, homelessness and DLA tribunals not forgetting fighting social work, the education system and public transport while raising 3 children under 5. I thought I knew lots about disability and inclusion but boy was I wrong. I applied for Partners thinking it would teach me how to get a Self Directed Support budget and I would get 8 nights away in a hotel for some respite. What it gave me was so much more that’s it’s hard to quantify in words. We still don’t have an SDS budget but we are well on our way to having a good life and my family has thrived beyond my imagination or expectation.

Partners challenged my beliefs and preconceptions surrounding inclusion. I thought I was inclusive but I had so much to learn. When I began Partners I was depressed, stressed, exhausted mentally and physically, overweight and I felt completely broken and beaten down. I had no vision for the future for myself or my daughter and honestly I felt lost. Everyone told me that the course would be life changing but I just couldn’t see it. Piece by piece every month, the jigsaw pieces all started to come together, first the foundations of what a good life could look like, that it was ok to dream big, and then the realisation that I had been using Hannah’s disabilities as a shield to hide behind. My mantra had become “oh I can’t do that… I have a disabled child”. But she wasn’t holding me back, it was my own fear of putting myself out there that was.

Once I got over that hurdle I began to feel stronger and stronger and as the months passed my confidence grew and I started attending events at parliament, giving speeches to politicians and forming plans and ideas of how I can help change the future landscape in Scotland.

For the first time in my life I can see our future and it’s so so bright – for every member of our family. Partners has given me more than I had ever though possible. It’s put me back together again, challenged and changed my beliefs, put fire in my belly and a spark in my soul. I can advocate better, conserving that precious energy and I’ve realised that the only limitations set on Hannah’s future are the ones society puts on her, limitations that I will challenge and push the boundaries of ableism and inclusion so that every child in Scotland has the same opportunities regardless of ability. The people I met on Partners have become friends for life and a whole new army of allies and inspiration to keep me going in those times when it’s hard to see the light.

I graduated feeling stronger than I have ever felt in my life and I still have so far to go, but it’s no longer an uphill battle because I have a partners team now to walk along side and make the load lighter. I’m now part of a community of Partners graduates and professionals with a shared vision. I’ve learned how to work together with professionals and also how to celebrate our differences and abilities,rather than focus on what’s wrong. We’re going forward celebrating everything that’s great and everything we can do. We’ve ditched the negativity and the jargon. We’re no longer stuck, just surviving, we’re full steam ahead forging new connections, embracing the future and enjoying every single day. I could write for days about everything that partners has given and inspired in me as it’s so much more than the course description. It’s life changing and life improving in the most unexpected of ways, and if you let it, it makes you grow and flourish in ways you thought were inconceivable.

Applications for the next course are now open and I strongly encourage both parents of disabled children and self advocates to apply. It’s run by in-control Scotland and the applications pack can be found here

http://in-controlscotland.org/library/partners-in-policymaking/

Author: Rebecca Pender

Rebecca Pender is based in Glasgow, Scotland and one of her many hats she wears is mum to 3 young girls under 6. Her eldest daughter Hannah has an extremely rare genetic condition called Inv Dup Del 8p. She also lives with epilepsy, brain abnormalities and a learning disability. As a family they refuse to let any diagnosis or struggle define what they can or cannot achieve, they may just have to improvise the plans. A graduate of the internationally recognised Partners in Policymaking programme, a leadership programme for parents of disabled children and disabled self advocates, Rebecca is a huge champion of disability rights and is determined to break down barriers for disabled people in areas like inclusion, collaborative care with health providers and social injustice. You can follow her on Facebook and also on Twitter.

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