I am in awe I’m actually able to write a blog reviewing a whole year’s worth of achievements. From what started out as a hobby to share with a tight circle of friends who share common interests, before my eyes turned into a successful blog with a VERY unique niche of disabled parenting. 2018 has been the most accomplished year I could have never dreamt of, the things I’m about to list just don’t happen to someone like me. I honestly feel like I’ve finally found my purpose – to help and encourage others with disabilities to start families (should they wish) and campaign with equally passionate individuals on matters that’d be life-changing to forgotten communities.
The ‘Life of an Ambitious Turtle’ blog and volunteering with Muscular Dystrophy UK have taken me to London and Glasgow, built my self-confidence and won me my very 1st award! Most importantly they’ve led me to make life-long friendships that’ll I’ll treasure forever – shout to the wonderful human beings over at #MDBloggersCrew, as well as encouraging me to branch out in the voluntary roles that I find so incredibly rewarding. Please stick this post out to the end, as you may very well be mentioned… Let’s start from the top!
Accessible Skiing in Glasgow
In March, our family travelled on the train to Braehead, Glasgow on the recommendation of my friend over at SimplyEmma.co.uk – right amidst the ‘beast from the east.’ A storm that’s now gone down in British history! Nothing was going to stop me and my eldest daughter Abbie from missing our booking to experience SKIING with two very different disabilities. Something I never thought was possible! Thanks to the incredible Disability Snowsport UK organisation, I skied on a sit-ski (specially designed for wheelchair users like myself) with fully tailored head and bilateral supports, completely compensating for my global muscle weakness. The icing on the cake was that my Abbie (who is partially sighted) got her own instructor who cornered off a quarter of the indoor slopes of Snow Factor just so my daughter could freely learn to ski without navigating other skiers which would have been impossible for her given her sight loss.
Read about Abbie’s experience skiing for the 1st time with a visual impairment 👇
Working with my 1st Brand!
In the months leading up to July, I was given an unexpected opportunity from former MDUK employee and friend Victoria to work with the UK’s Number 1 website for parenting and support – MumsNet.com and the pregnancy stretch mark cream brand Mama Mio Skincare. The two companies were working on a joint campaign – #ExpectingChange in an effort to tackle the issue of the general publics unwillingness in this day and age to give up their seat on public transport to pregnant women! The reason they wanted input from a disabled Mum was they were doing an event in Lewis Cubitt Square, London where they wanted a diverse group of Mums all talking about their experiences being pregnant on public transport. The campaign was backed by famous Mummy blogger Mother Pukka, so I got to meet Anna herself and some other amazing influencers. It was such a humbling experience that I could put forth what it’s like on public transport as a formally pregnant Mum AND wheelchair user and it actually is taken onboard (pun intended)! It certainly made other Mums think and we had lots of fun travelling and being a part of the lovely picnic in the park for Mums and children, on a gloriously hot day in the middle of the freak 4 month-long heat wave!
You can read all about the #ExpectingChange Campaign in this blog post…
Celebrating 10 Years of Campaigning with MDUK’s Trailblazers at the House of Commons!
Within a week of working with MumsNet, my family and I were formally invited back to London to attend “Trailblazers at 10,” a celebration that was to take place in the House of Commons for all the young disabled people in Muscular Dystrophy UK’s Trailblazer division to come together, reminisce on all the awareness and access campaigns we’ve proudly taken on over the years and celebrate, together as a team all the major accomplishments Trailblazers has achieved for disabled people in Britain.
I’ve been a Trailblazer for 7 of those 10 years, so I’ve seen and been a part of many of their major high-profile campaigns such as;
- End of the Line campaign – fighting for better access for disabled people on public transport
- Locked-Out – campaigning for better and more accessible housing
- Changing Places – speaking up for the 250,000 profoundly disabled people whose needs are not being met by standard disabled toilets
The event itself was incredible, I kid you not they should have invited the Guinness World Record people – as with over 40 Trailblazers in attendance, primarily wheelchair users, the room was packed to the brim, surely being the most number of wheelchair users ever in Speakers House at any one time! It was quite emotional too, seeing everybody I’ve worked closely with as we all live miles apart from one another, catching up and raising a glass to make life better for us and the next generation of disabled people. It was also my 1st time in Parliament, with childcare and school to contend with I usually send in a statement for somebody to read out on my behalf at their regular All Party Parliamentary Group (APPG) meetings, so yes I was very much in awe acting embarrassingly like a tourist in my own country that day! Trailblazers also held a lovely after party at a swanky bar where we all mingled over some bubbly. It’s so nice campaigners get to celebrate their achievements too as sometimes society can underestimate how much it takes to fight for your rights. I owe A LOT to MDUK for getting me into their Trailblazer’s division back in 2011, they were the ones that got me into campaigning for disability rights, access and awareness in the first place and totally changed my outlook on equality.
One night it dawned on me during my nightly twitter trawl just how many bloggers I followed with various forms of Muscular Dystrophy. There was Carrie Aimes from ‘Life on the Slow Lane’ – a freelance journalist, most popular for her disabled celeb interviews, Kerry Thompson of ‘My Life, Kerry’s Way’ – an avid Changing Places campaigner as well as being a mental health advocate and lifestyle blogger and Emma Muldoon of ‘SimplyEmma’ – one the UK’s Top disabled travel bloggers. Of course, there’s FAR more but these were the gang I communicated with the most, so I just threw the idea out there one night about forming a twitter page where we can promote our blogs but work as a team so people could follow us all in one place. Much to my shock, everybody loved the idea and there #MDBloggersCrew was born!
We did start off as a group of 4 female bloggers, but it wasn’t long before we roped in Ross Lannon of ‘A Life on Wheels’ to add another perspective into the mix and we all gel really great together. So far as I type, we now have over 300 followers and have some exciting ideas we’re working towards for 2019, so do make sure you’re following us over on twitter so you don’t miss a beat (or a blog rather!)
Being Awarded ‘Campaigner of the Year 2018’
If you follow my campaign work, you’ll know my biggest drive and focus this year has been for the Changing Places Campaign – working with parents with children with profound disabilities and other adults like me who cannot use standard disabled toilets, to show society why Changing Places facilities should be made mandatory in all new, large public buildings. My story of opting for a surgical catheter due to lack of facilities in the community went in the media via The Guardian and The Pool and I posted several very personal blog posts on why Changing Places matter so so much for our quality of life. Each has been shared thousands of times.
When I first saw Trailblazers were about to fight for Changing Places, I was adamant I was going to put my heart and soul into this one because it was through their education that I learnt it wasn’t right that I felt forced to restrict my fluid intake, making myself ill and fight constant infections just to have a normal, active life. For over a decade before the campaign, I merely got on with it as I thought my needs for a hoist and adult sized changing table were actually pretty unique, so there was no logic to them being mainstreamed in disabled toilets. I had come to terms with the fact I was simply, “too disabled” to participate in society without making huge sacrifices. Sacrifices that’d end up impacting my health SO much, I self-advocated for a medically unnecessary operation to insert a Suprapubic Catheter into my abdomen. Although I didn’t initially intend to get as personal publicly as I ended up being for the sake of the campaign, I am so glad I did because I understood the only way people were going to understand that there are 1/4 of a MILLION people who need these facilities in the UK, is for people like myself to tell their story. To explain it in layman’s terms, why a bunch of grab rails just doesn’t cut it.
When I got an e-mail shortly before the National MDUK Conference this past October saying I’d been nominated and won the award of ‘Campaigner of the Year 2018’ specifically for all I’d done for the Changing Places campaign, I was in such disbelief I wept! Why did this award mean so much to me? This may shock readers but I am not ashamed of it anymore, I have no GCSE’s, no diploma’s, no A-Levels…Nothing but some certificates in certain topics of interest I’ve gained through Distance Learning as an adult. Why? Muscular Dystrophy took my education, all my surgeries and progressions happened during those vital adolescent years that set you up for a future. Mine was robbed from me. This award means more than GCSE’s because I earned it doing something that was meaningful and that could help thousands of people. I was presented with the award at the conference by Gabby Logan and even got to sit and have cake with her and Sue Barker prior which was such an honour. The experience of being handed an award, framed with my name on it will remain one of the most memorable moments of my life, up there with the birth of my two girls…
Attending my 1st Job Interview
Here come’s another big revelation. I have never been invited for a job interview, until recently and I’m 30! Sounds outrageous right? There are a few reasons for this and with them as a combination, you’ll see just why it’s taken so long. Firstly, as I revealed above – I do NOT have any GCSE’s, only certificates on topics of interest such as I have a Grade 3 certificate in British Sign Language, Level 1 Makaton and known First Aid. In order to get a job, not having any basic GCSE’s down in the Education field doesn’t look great, does it? Secondly, due to the extent of my condition a) I’d need an insanely compassionate employer who’d allow me to work from home on bad days, have time off for frequent hospital appointments/surgeries and be sympathetic over childcare and b) they’d need to have a Changing Places facility either in their company building or nearby that was open during the hours I was to work. With all that combined, let’s be realistic. Who would hire me? This is why I am stuck but thriving none-the-less enjoying my voluntary roles.
In November however, a job came to light somewhere I actually go regularly and they employ people like me AND they had a Changing Places toilet! It just so happened to be my dream job – supporting people with Neuromuscular conditions. For confidential reasons I will not say where I applied to. The head of the organisation had read my limited but passionate CV and actually gave me an interview. They gave me a chance and that meant the world to me! Although I did not get the position, I am incredibly grateful to know now that there are places (though limited) that I could seek employment within the disability sector, that may very well consider me in the future. Being interviewed for the 1st time has restored my faith that one day, yes I may actually get to work for a charity I’m passionate about and it’s boosted my confidence, now knowing what to expect from an interview and how I can better myself, my CV and my education via Distance Learning to better improve my employability in the future.
Getting back into Education
Last but not least, just a fortnight ago I signed back up with Distance Learning and decided to undertake 2 topics of interest – a Diversity and Equality course that’ll help me inline with the campaign and advocacy work I do, as well as an Autism Awareness Diploma. My hope is that my keen interest in understanding disabilities beyond my own experience will open up new opportunities in years to come.
There you have it, a whole year in review. Editing this back, I am still in awe of how much was achieved in just a year. Bring on 2019, this Ambitious Turtle is a-ready and a-waiting!
A national network of over 700 young disabled people who fight social injustices and campaign for change on a multitude of access issues across the UK.