After months of travel and adventure I have been staying at my mums for a couple of weeks. This has been much needed and very pleasant. Usually I leave my London flat and visit my parents because I am ill or very run down. To have been in my home town, full of energy, full of stories and full of health has enabled so many good times. To tell my mum, dad, sister, step dad, step mum, grandparents and step brothers (yep, it’s a big family) about my adventures was nice. Moreover to hear how they are, what they’ve been up to and grab a few drinks in town has been amazing.
Today I also managed to see a physio who demonstrated some exercises for my PAs to do on me. For the past 10 years I have neglected my body, pushed it hard and am suffering a little from getting older – 30 next September! My Spinal Muscular Atrophy means I have a normal life expectancy, but will get weaker. I cannot stop this, but to do some stretches and be a little more careful will help. I am also getting a new wheelchair soon to support me better. This is through the NHS voucher scheme and Access to Work. I have also changed Personal Assistants and ready to head back to London next week.
If you have read my ebook (The Disability Diamond Theory) you will follow how these aspects are my foundations. Without the relationships that support me, my health in check, my wheelchair and PAs I cannot work or do the finer things in life. If any of my foundations crumble or my health deteriorates; I could not do all of these cool things.
Speaking of foundations and finer things in life. I headed up to Manchester last weekend to see my good friend Rich from Coventry uni days. We had a blast as always; caught up, debated politics and disability, ate well, drank lots and just reminisced. Rich has struggled since arriving in Manchester with changing local authority, fighting for enough social care and general disability provision. As a result he manages to get some food and a shower, but has no help with his house work. As a result you can see the clutter and lack of hygiene that had built up.
As the above pictures show, we gave it a going over! Filipe was working his last shift with me, before supporting more with my business ventures. He had no motives or reason to do such a lovely thing, but offered to sort and clean Richs house. You can imagine how frustrating it is for Rich to see this mess and have no means to make changes. He was so grateful to Filipe after 2 full days of working (throwing out 8 bags of rubbish, arranging books etc and ferociously cleaning every room). The results are clear and will make a huge difference. However, why is it Rich has such limited support? I am asking him to write a guest post to explain himself.
From my side, I am so grateful to have enough support and try to channel my online work into supporting other disabled people. Today is the anniversary of my going self-employed! Since leaving Scope I have achieved many personal and professionals goals. I have also learned a great deal about myself, my projects and disability in general.
The best part in reflecting this with Rich has been understanding the effects (good and bad) and seeing where I currently am professionally. This I feel is explained in 3 points:
1) I have become more of a disability lifestyle writer, rather than a political/campaigner during the Scope days. I still hold strong personal political views, but I see my role in the bigger picture being through my personal story and projects such as Disability Horizons. Bigger organisations are more capable of activism, and I am there as an individual. Professionally I will stick with everyday life support.
2) Where I still assert a serious vibe is through my online facilitation projects. These are not political, but do seek to create debate, encourage sharing, learning and offer support. I have achieved this through my webinars, ecourses and econferences. These all give a space for other disabled people and professionals to come together, explain their views and create some solutions.
3) I have also been able to collaborate with other organisations in the public and private sector. I have supported Scope, Hackney Council, Lero and many others with social media, new media and disability awareness expertise. It is a drop in the disability ocean, but each project has been an innovative success.
Beyond work, I am plotting some bigger plans and yet more personal challenges. Stay tuned for news on my roadtrip in September! Until then I am looking forward to a British summer, catching up with friends in London, launching the Disability eConference and developing all aspects of myself and my work as I go.
Thanks for all of your support 🙂