'The beginning of our story' by Angie

So, I thought it may be a good idea to write a little more about the journey that has been taken for me to get here, beautiful west Wales.

 I think it is important to say a fair bit about the challenges and celebrations I have experienced being the mum of a child who is (sometimes) disabled. The impact that this has had on my other child, my husband, myself and friends and family. I say 'sometimes' because Molly is only disabled when attitudinal or physical barriers are put up in front of her. She has and always will have learning difficulties but she is not disabled by them. She is disabled by people being unwilling to accept, welcome, include or involve her. Or people refusing to adapt activities in order for her to take part. Happily, we have had an incredible welcome and experience since being here. For example, everyone (bar one) we have met have instantly accepted Molly for who she is and not asked us intrusive questions like "oh, what's wrong with her?"

She already goes to a kayaking group at our local swimming pool once a week. The young people working there welcomed her unconditionally, they were open and happy to allow Molly to use the kayak in the way that was comfortable for her. There is no pressure for her to do what everyone else is doing or in the same way. Such is their inclusive and welcoming attitude that they took the time to forward us details of other acitivities they thought molly may enjoy. 

Tonight we are trying out another local activity. A local venue, provides (free of charge) an opportunity for anybody and everybody to go along and make music. there are no restrictions on what 'music' is. You can play/use an instrument, use your voice, a stick, the floor, your body - what ever feels right for you. i chatted with the woman who facilitates the session last night . I did not label Molly in our conversation but i did explain that it is unusual to find activities that are welcoming to people who perhaps need real freedom to express them-selves and she really understood what I meant. Tomorrow evening we're trying out an African drumming group. Oh yeah, and, Molly is also going swimming with her WONDERFUL PA/friend Fran each Thursday with other families we have made friends with through the Home Education tribe.

 

The only disablist attitude we have encountered here was at a specialist service youth club. We were 'sign posted' to it by the social worker who was helping us apply for Direct Payments for Molly. In the past we have steered clear of specialist services, holding the strong belief in inclusion and therefore opting for non specialist options (there's loads of stories attached to that comment). So, anyway, to cut a long story short...

We arrived with Molly to a not particularly enthusiastic welcome (and I will say at this point that despite our historical choices we entered into this experience with openness and a desire for it to be right for Molly) we went ahead and got chatting with various people. Molly was great, she explored the new environment, sat with the other young people there to have a cup of tea, stayed within the boundaries (that is, she didn't wonder off outside) and was generally appearing to have a positive time. However, about 20 mins into the visit I was then introduced to the youth leader who proceeded to tell me she didn't think the group was right for molly and that they couldn't meet her needs! Shortly afterwards (I won't go into any more details), Molly was ready to leave and we never went back. Molly has not mentioned it since, so I know from experience she is therefore not interested in going again. 

I have described that experience  to demonstrate the difference an attitude makes. By making the statement she made, the youth leader was instantly excluding a young person she knew nothing about, had met only 20 minutes previously and made no attempt to ask her, me or Rob for our knowledge and expertise. She put up that barrier I mentioned earlier and disabled Molly. 

And of course the positive and the negative experiences I have just described were not new to us coming here. They have been a part of our lives from the moment Molly was labelled.

 

Fortunately, we chose a path of inclusion, instinctively, but also really importantly because we became a part of a network of parents who believed in and fought for inclusion. I trained with and worked for that network, an organisation called Parents for Inclusion who provided support to parents of disabled children wanting their child to be included in mainstream school/activities and who were experiencing barriers to that happening. And there are 18 years worth of stories here, but for now, I really want to focus on our move to west wales from more recent times.

We had talked and dreamed about selling up in London and moving to the country to be self sufficient and live gently on the earth for years. We had tried a couple of times. The first time we thought the Brighton area would be a good compromise, we looked at properties but actually the truth in the end was we were not ready to leave London or our network of support , we were still learning how to cope with the barriers being thrown at us.

 

Some years later we considered Hebdon Bridge, because it had a reputation for being an open minded community and I had parent contacts from my work, even a job offer. We put our house on the market and travelled up to Hebdon Bridge with a pile of property details. We weren't able to find a property we really liked and on the last viewing I had a wave of panic and had to get back to London as fast as our little Combi could manage. It took us about 8 hours to drive back, plenty of time to talk through my panic, our dreams and what our next steps were going to be. 

As it turned out, our next steps were confronting those things we were still finding difficult and working out what we needed to change. The first major change was opting for Education Otherwise. Oh yes! And what a triumph that was. Not without it's own challenges and upsets but the doors that kept opening up for us once we started to seperate ourselves from the system was FANTASTIC. Both Molly, and we, at last had the freedom to learn in ways that were meaningful to Molly, respectful of who she is, without pressure, without being impossibly graded and labelled, at her own pace. She was at last enabled to make real choices (by that I mean choices that were actually meaningful to her) experience supported independence and boy did she flourish - we all did. 

I apologise to my son on a regular basis that we had not opted for home education for him - we didn't even know we could when he was going through the system. He, Jake, had his own struggles at school. Mainly that he was not being allowed to express his developing identity, he recognised so many of the rules and regulations were nonsense, he witnessed and experienced, himself, injustices carried out by those people whom he was 'supposed' to respect - dying his hair pink and wearing a piercing under his lip was a punishable offence and he was made to sit alone in a room all day. He was told his appearance would hinder him ever getting a decent job, in a bank for example! Well, "thank goodness" he, and we thought! So, once again Jake - "sorry"!  

Joking apart, I do wish I'd known I had the right to educate my children outside of the school system sooner than I did . At least I was able as a parent to support my children through the trials of school and I hope, I believe, I enabled Jake to grow with a strong understanding of human rights (he did also bare witness to the struggles we had in fighting for his sisters inclusion) - he did in fact go on to study and achieve a degree in Human Rights! 

The other interesting change happening in our lives was that the friendship group Molly had grown up with actually began to disperse as they all got older. We had hoped for and spent years nurturing, with the support of the parents of those friends, the relationships and friendships to have longevity. For many years there was a lot of getting together, sleep overs, party's, trips to panto etc. But none of that secured the friendships into the teenage years. In fact, what happened was her 'best' friend eventually totally ignored Molly and her neighbourhood gang were all off out doing teenage stuff which Molly could not access without support. In amongst that though she was still able to 'do stuff' and had a busy, happy time of it. That was only possible however with eventually being able to access Direct Payments. Thank god for Direct Payments!! (Yes, another story is there in waiting). 

By the time we left London Molly had been going to Peckham Shed (AMAZING inclusive theatre group) for years and loved it, a cycling club every week and had a pool of 4 wonderful Personal Assistants with whom she went shopping, swimming, to festivals, to cafe's or just hanging out. So, you may be thinking "why did you leave London when things were working well?"

To be continued......