As we close on 2019, I’m left in awe at how much has happened in 12 months and ultimately achieved! It has definitely been the most trying year of late and a rollercoaster of emotions. Hurdles were sky high from beginning to end. At times I began to lose my fight and thankfully family and dear friends saw me through and carried me wounded from endless battles to that finish line that seemed so far away. For those amazing individuals, I am grateful beyond words for you were my heroes when I needed help the most.
And with my gratitude extended indefinitely, let’s get this show on the road.
What happened in 2019?
Lack of Access for Routine Cervical Screenings
Right as 2019 rang in, frustration was rife as I opened my umpteenth letter reminding me that by not attending my cervical screenings I was risking my life. I found the letters traumatic, not because I feared attending or wanted to opt-out of this free life-saving service, but because my practice made out like my disability was too complex to accommodate having this cancer screening. From my first letter at age 25 I had actively pursued a way of accessing the screening given my need for a hoist, only to be told a) my GP practice doesn’t have a single hoist available for a wheelchair user/non-weight baring patient, b) there was zero funding available to implement hoists in GP practices and c) my GP assumed I mustn’t be sexually active because I’m severely disabled – despite I have TWO children. It got me wondering, how many disabled women have DIED from cervical cancer that early detection through accessing their smear tests could have prevented?
A thorough Google search later and I learned the devastating truth that nobody had ever conducted a study on how many disabled women couldn’t have their smear test for reasons like no hoists, exam tables being too high, involuntary movements, being housebound or otherwise relating to their disability, nevermind a record-keeping of the death toll caused by ACCESSIBILITY issues, of all things! That’s when I decided to start a petition.
I never imagined my story of being unable to access cervical screenings to cause such a stir in the media. Over the past year my story, along with other fearless disabled women in the same boat, was covered several times in the papers and other blogs. Disabled women came out in their thousands on twitter to tell their near-identical stories. I was honoured to be contacted by Jo’s Cervical Cancer Trust who pledged to do a study to see what access issues women in our community were facing and the results make for grim reading!
— Jo’s Cervical Cancer Trust (@JoTrust) August 8, 2019
To date, the petition has 109 signatures and we are planning to take it to 10 Downing Street in 2020. If you haven’t done so already, please support my petition and Jo’s Trust, by doing so you’re making sure the lives of disabled women are valued and ultimately saved…
We Moved House for the Last time!
Readers may recall past blog posts such as Locked-Out – The REAL Cost of Senseless Social Housing Policies, where I explore the devastation caused by the hidden housing crisis for accessible homes (or lack thereof). Over an 8 year period, we’d been moved THREE times by our local council in a desperate bid to find a home fit for a wheelchair user and individuals with visual impairments. Hopping from one property to another, the next slightly more workable than the last yet still half the home inaccessible – for myself especially. Our last home had a through-floor-lift installed via the DFG to enable me to access the main bedroom and bathroom, however, the girls room was still off-limits and to get to the bathroom I had to cross the top landing, a terrible accident waiting to happen as my wheel rolled an inch away from the top step.
Out of the blue in February, we FINALLY got a bite! A 3-bed bungalow had popped up on the system that had slipped under the Disabled Housing Register radar, (which sadly happens a lot) and only adds on to the housing crisis for people with disabilities. A quick-thinking council employee manning the listings that day had recognised the address as his deceased aunt’s who had M.S, therefore he recalled all adaptations made for her within the property. If it had been another team member dealing with the listings that day, the property we call home now would have gone, with all it’s life-changing adaptations, to a family who didn’t need them. Crazy but true…
It took 4 months for our council to completely overhaul the property to make it habitable after previous tenants (non-disabled), must have been forced to move as they’d completely trashed it. Windows were smashed in, kitchen units hanging off and in pieces, flooring half ripped up over several rooms and obscenities were written across the walls. It took a very open mind upon our viewing, however as my O.T reminded us, we could be another decade on the register waiting for anything near as good as this… We put our trust in her and the result has been life-changing beyond our wildest dreams!
For the first time as a Mother, I an now sort my daughters for bed, guide them with teeth brushing in the bathroom and assist toilet training, read them stories in the comfort of their beds and tuck them in, kissing them goodnight and even close the door behind me. A wheelchair accessible bathroom with wetroom and Closomat toilet means I now toilet and bathe like the average person and the inclusive kitchen design, which I explore in ‘Inclusive Kitchen Features the DFG Can Make a Reality’ means I can manage dishwashing and cook with as much independence as possible. Probably most importantly as far as safety is concerned is that thanks to an electric door opener I can now come and go without assistance. Whereas upto now in the event of a fire, my only option was to get the children out a window and beg them to stay away while they looked on knowing I couldn’t escape.
You don’t appreciate the circumstances you are forced to live in when survival is your main focus. We’re now 8 months in our forever home and feel so incredibly lucky!
A big Thank You to Bolton at Home for not giving up on us.
Want to know more about accessibility in the home? Check out 7 Things That Make Our Home Accessible
Habinteg Insight Advisory Group
Habinteg Housing Association is one of the only charities that are actively trying to raise awareness and numbers of accessible properties available for people with disabilities here in England. That fact is why I joined forces with them during our housing battle on their #ForAccessibleHomes campaign! It also helped give me some focus while we never knew if we’d ever find our forever home that’d really meet our needs.
To my surprise, mid-year following our journey and seeing my dedication in helping other families in the same boat, I was offered a place in the Habinteg Insight Advisory Group which would give me the incredible and honourable opportunity of going to London to sit in on their APPG meetings in Parliament! Being given this huge voice to share our near decade long fight, the toll it took on us and how amazingly life-changing it was to finally be in a home we can function in as a family, is mindblowing! Sadly I can name way too many people that are still living in inaccessible properties and now I feel like I’ve been given a pair of boxing gloves to fight this lack of inclusion in the housing market for families still struggling.
Struggling to find Suitable homes living with a disability – a high-profile media piece my friend Kerry Thompson and I worked on for the charity.
We went to Naidex!
Back in March, for the first time in my blogging career, I actually made it to Naidex! If you don’t know what’s so exciting about Naidex, basically it’s a HUGE annual exhibition for companies selling mobility, disability-related and bespoke products to showcase what they have on offer for persons with disabilities that may improve our quality of life.
I teamed up with freelance journalist extraordinaire Carrie Aimes to represent MDBloggersCrew (if you’re not following us over on twitter, why not?), as well as our own blogs. It was great meeting up with my bestie Carrie for the first time, rolling around together exploring each stall, we also bumped into DMD Pathfinders and fellow parent living with Muscular Dystrophy – Mitch Cole which was a lovely surprise! On our stroll around the exhibits, we stopped for a chin wag with the team at AccessAble for whom I do accessibility reviews for, Calvert Trust who offer disabled people fully accommodated outdoor adventure weekends, Able Magazine – who you’ll find MDBloggersCrew Emma Muldoon a featured columnist and Centrobed, designers of bespoke specialist beds and cots for individuals with complex medical needs.
Overall I really enjoyed spending the day seeing so many people I work with online, exploring disability products that I’d never seen before and traveling to Birmingham for an ultra-rare child-free weekend with the Mr. We are already making plans to return in 2020, so if you’d like to meet for lunch or a chat, let me know.
For exclusive interviews, mobility product reviews and to learn about Ullrich Muscular Dystrophy check out Carrie’s blog – Life on the Slow Lane
Read a fathers perspective on parenting with DMD – Two Doughnuts
Guest Speaking at NMC
During the Summer I was invited to speak about Relationships with a Neuromuscular condition to the young people at The Neuromuscular Centre in Cheshire alongside the rather famous Tom and Charlotte. The talk was all about giving the young people a positive, yet realistic perspective on dating, romantic and sexual relationships when you have a progressive muscle-wasting condition. Tom and Charlotte both have forms of MD and are newlywed! Sharing a glimpse into how it works when both people in the relationship have physical disabilities and managing Personal Assistants, juggling privacy with the need for assistance for example. They also shared some funny stories that had the room roaring with laughter, a great ice breaker as these topics can be awkward for young people. I was able to bring to the table, life in a somewhat interabled relationship (where only 1 person in the relationship has a disability). I say ‘somewhat’ as my fiance is visually impaired, however as he has taken on a caring role with me to give us some sense of normality, we simplified it for the youngsters. Discussing how we met via online dating, how we juggle, as well as why he chose to take on some of my care to give them food for thought as it’s such a personal decision. For us, it made sense to have PAs for certain parts of the day and his willingness to assist with the rest gave us that freedom we craved. We all took questions at the end where the youngsters were curious as to how pregnancy, childbirth and beyond worked. It was good to see that these youngsters hadn’t ruled out starting a family somewhere in the future, purely because of their Neuromuscular disease. All-round it was a really educational talk, for us as well as the youngsters as we got to see how much more confident these teens were compared to ourselves at that age when society wasn’t as accepting of disabled people having dating and family aspirations for the future.
I look forward to returning for another talk in 2020!
Did you know the Neuromuscular Centre is the ONLY place in England that offers specialist physiotherapy to adults with muscle-wasting conditions? Read more in my post – Physio After 18
I’ve shared my active job search this year within the charity section to help raise awareness of the challenges disabled people face securing meaningful employment. Attending countless job interviews, taking me even as far as London! Yet its that old saying, the right opportunity will find you! That it did…
Feeling discouraged and bogged down with other ventures, an individual I’d contacted quite a while previously had got talking to me out the blue, one thing led to another and I became a trustee of a new, one of a kind charity she’d set up called Enabled2Parent – Supporting parents with disabilities or additional needs.
If that wasn’t a dream come true alone, in November I was given the position of Communications Manager, a part time job I could do from home and have the flexibility I need for my girls and my health. It still hasn’t sunk in yet to be honest. I’m overjoyed that there’s now a dedicated organisation for disabled parents in the UK, where there hasn’t been prior. Enabled2Parent is bridging a huge gap in support and resources for parents like myself and I feel truly honoured to be part of it.
Are you a disabled parent needing support or practical advice? Visit www.enabled2parent.org
Painstaking Fundraising & Fairytale Miracles
Fundraising for a new powered wheelchair continued from 2018-19. Throwing myself headfirst into raffles and fundraising events, trying to scrape together the £16,000 I needed for the Permobil F3. Time was ticking away as the only grant that I managed to secure had an expiry date. With the pressure piled and momentum slowing, this journey became the most emotionally draining venture of my adult life. I became increasingly isolated in a chair that was falling apart around me. Missing important memories with my two girls, 7 and 4, such as dance performances, family outings, and school nativities. 18 months into this nightmare, I had no choice but to re-evaluate the wheelchair I’d opted for. Not wanting to be in this position another year down the line and it affecting my mental health, I decided to move the goalposts and to my 2nd choice powerchair – the Quickie Sedeo Pro 700R which cut the cost down. Still a crazy amount of money, however more realistic at this point.
In early December an anonymous donor came forward offering the remaining monies I needed to reach my new target. I cried! Big, gulping, ugly crying in fact as I was filled with such immense gratitude, joy, and relief that this selfless individual had thrown me the lifeline I’d been praying for. Some might say this was a Christmas miracle. Miracles don’t usually have my name on it, yet here I am writing this in my new powerchair, feeling so incredibly blessed, somewhere it must have been my turn…
If you’ve gotten to the end of this insanely long post, hit that like button to receive a virtual gold star from me! Thank you so much for your continuous support following ‘Life of an Ambitious Turtle.’ Here’s wishing you all the best in the New Year!
See you in 2020!!