An exciting new support/social group has just set up in Brighton for disabled parents called Parents Unlimited. Two GIG members, Cara and Alice, identified the gap in support or social connections for disabled parents in the city, and they’re setting up a new social group in 2018 for parents living with disability, long-term health conditions and impairments.
Below is the blog post from the group’s organisers, who will be holding their very first meeting in the New Year. To find out more please read their incredible blog posts below and visit their Facebook Group at: https://www.facebook.com/groups/139671533333529/
Our names are Alice and Cara. We met recently by chance at a loosely related ‘disability’ meeting. We both noted that we were each with our disablements and associated experiences of societal obstacles, but that we were each also mothers to small children. We also quickly realised and discussed a real lack of social groups for those of us in the local area who happens to be both disabled and a parent. Convinced that there are others out there in the city that face similar struggles and triumphs, we are now in the process of initiating a Facebook group as well as forthcoming monthly meet-ups all of which aim to be inclusive, non-judgemental and facilitative of access for disabled parents and their children to engage with child-friendly social, physical and wellbeing activities. However, beyond our personal experiential knowledge, we are not experts, nor do we profess to be.
We headed immediately to Possability People for advice or assistance in how best to approach this. Lilly Kennard and Jake Mackay of Possability People confirmed our finding that there weren’t any existing groups and agreed to support us to form and uphold a social group. They suggested writing something of a blog as part of Possability People’s website in order that we could extend this idea to more than the two of us in the local area that we felt sure existed, to whom this endeavour may be relevant or useful. In what follows, we each present elements of our experiences through our blog pieces. Contact details of Possability People, and our Facebook group information are provided at the end should you wish to get involved or register your interest.
Meeting Cara at a Possibility People group was the catalyst for addressing a personal bugbear – the lack of local support for disabled parents, and lack of provision for disabled parents to participate in child friendly activities. Having restricted mobility due to juvenile onset rheumatoid arthritis, I thought it would be an excellent idea to complicate my life and test my endurance skills further, by opting to reproduce. When my tiny dictator, AKA baby was 16 months old I also sadly became a single parent, adrift in the wilds of Brighton with little family support. After a period of despair and excessive cake consumption, I dusted myself down and began to look around for some support for myself and baby to begin to participate in life again. I soon realised how optimistic this was. As a non-driver who struggled to get about both with and without the baby, what I was seeking was a little practical help to take him to the park, to medical appointments, to baby groups and so on. I contacted various organisations and was met with insurmountable obstacles at every turn. There is no local Homestart provision, baby groups and activities were not always accessible or had inaccessible layouts, public transport was almost impossible to use as a mobility impaired person with a baby buggy, Children’s Services provisions had been cut, local charities did not cater for disabled parents, and I was assessed as ineligible for financial help with securing any PA assistance. I was left feeling like a very inconvenient being, desperately trying to contort my stiffened limbs into a tick box. Try as I might, I couldn’t find a box to fit, and was left deflated. I also had a worrying exchange with Social Services, since my health visitor had enquired as to whether there was any practical help available for getting baby and I out and about, prompting a call from a concerned social worker whose opening line was ‘we understand you are having problems caring for your child’. That is surely the kind of misunderstanding that strikes terror in the heart of anyone juggling new parenthood and disability. I was managing perfectly well at home, I just wanted some help for us to engage with the outside world.
Eventually after much wading through bureaucracy, my health visitor managed to elicit some help, in the form of someone from the Children’s Centre coming to assist us for 2 hours per week. It was made clear that this was not a service normally on offer – the Health Visitor had to build a case to her superiors to illustrate my plight; help was provided on a temporary basis only and could be withdrawn at any time. With the extraordinary gift of my weekly 2 hours bestowed upon me, I decided to venture out to my first baby group. Like Cara’s experience, this was a time for making memories – awful ones. I contemplated the prospect of attending a baby group with the usual reservations of a first time parent- imagining a clique of experienced parents with superior parenting skills, and anticipated banal discussions about leaky breasts, pelvic floors and poo. But more daunting were the extra considerations of how I would physically get there, and how I would be received as a disabled parent – would I feel judged and out of place? On the day I rose at 6:30am, battling through my morning pain and medication-induced grogginess to get ready in time for the inhumanly early start which baby groups like to inflict on people. The Health Visitor arrived to help us travel by bus to the other side of the city, not being authorised to drive us. At the venue we were greeted with a room full of chattering mums and crawling babies, all of whom were sprawled on the floor on cushions – those dreaded floor cushions which are the enemy of the immobile. I stood self-consciously for an age while a member of staff went upstairs in search of a chair for me. Eventually the chair was brought down and placed against the wall in the corner, with a sea of toys and crawling babies between me and the island of mums on cushions who seemed miles away. We eyed each other awkwardly. Bleary-eyed and desperate for coffee, I was informed that hot drinks were prohibited for health & safety reasons. By this point, I already needed wine. The Health Visitor sat conspicuously beside me wearing a staff lanyard, looking as if she was facilitating my day release from Holloway. Baby also decided to compound my despair by resolutely refusing to wake, sleeping through the entire session including a raucous singsong, despite me prodding him repeatedly. Halfway through the group, with my baby never having woken it was time to leave, as my allotted time with the Health Visitor was nearing an end. It was a long time before I felt ready to attempt a baby group again.
For me, there are many examples from which to choose to write about such as through pregnancy and maternity leave but of them all, the memory that I choose to share below is one that still smarts and bothers me. This recollection dates back to summer 2015, a point at which my daughter was very young, I being a first time mum, and still recovering from a lengthy MS related relapse, but recovering nonetheless.
Having agreed to meet at a baby group with several other mums from the ante-natal group my partner and I had joined prior to our daughter’s birth, I set off to the meeting point with my daughter strapped to my belly. It was a baby group located on the sea front along Madeira Drive, with relaxing views out on to the sea; idyllic, peaceful, beautiful. I had the route planned in mind. My daughter and I got off from the bus and walked gently towards the antiquated lift at the top of Madeira Drive in order to get to the beach on the ground floor. The lift descends into a nightclub premise, after which a short walk brings you to the promenade, and to the beach beyond that. I had asked friends about the lift as I had never otherwise seen it in operation but I was quickly reassured that though it smelt a bit ‘damp’ it was working. After making it across the coast road and locating the lift in its grand Victorian though somewhat dilapidated state I was jolted at the handwritten notice attached to the frontage that blankly informed the lift was out of order. I walked a little further along the coast road towards the Palace Pier; looking two floors down towards the beach I could see the very building at which my friends with their baby’s would soon be arriving. That building could suddenly have been in a different country, a different world. It was extremely close while at the same time nauseatingly difficult to reach. I began mentally racing through different alternatives to get us to the meet up point – to walk down to the pier and then after a sharp left-turn, walk back the same distance along the lower undercliff; or to get the bus to the pier and then walk the stretch of the beach to the group; or to walk to just the next stairway entrance along the coast road and descend the stairs to the promenade level. Each option encompassed the unwelcome knowledge of the return walk after the class. Regardless, I chose the third option. I began the march onwards. As I set off, the physical heaviness that walking often implicates began its slow, creeping return – each step feeling as though wading through treacle which in turn makes a minor stroll overwhelmingly exhausting. The familiar feeling of fatigue began to set in, my left foot succumbed to foot drop in its inability to necessarily clear each walking step. As we approached the stairway I could make out that it had been cordoned off with large metal fences. This option was also off-limits. And so a reasonable option was foreclosed, which then made the likelihood of reaching the intended destination even bleaker. Additionally, having expended a substantial amount of energy to get to this point, the thought of attempting to muster enough to get even to the next bus stop seemed an impossibility. I made my way to the nearest seat and sat slumped with my sleeping daughter strapped to my belly on a bench in the upper tier of Madeira Drive. Feeling as though I had just climbed a mountain, my eyes hot with frustrated stinging tears, I gazed hopelessly at the destination that proved impossible to reach however close it was in reality.
While I recognise that this experience was a rather minor aspect in mine and my daughter’s life, it struck me that however much I discuss this with my ante-natal friends they wouldn’t necessarily understand this predicament without their own similarly lived experiences. The idea of sharing this utterly hopeless and frustrating example with others may help not only me, but perhaps other parents with varying levels of disability – hence the importance of sharing and discussing, and the importance and need of getting together in both an online and offline sense.
To Get in Touch
Our new group, Parents Unlimited, recognises the challenges and triumphs in life that being a parent with disabilities, long-term health conditions or impairments can sometimes bring. If our Parents Unlimited Facebook Group, and forthcoming meet-ups, are something that you would be interested to hear more about or get involved with, please join our Parents Unlimited – Brighton & Hove Disabled Parents Facebook group at https://www.facebook.com/groups/139671533333529/. We are also in the process of establishing an email account, details to follow soon. Please be aware that we both work so will get back to you as soon as we can!
Additionally both Lilly and Jake at Possability People have been supportive of our social group idea, if you wish, you can contact them at: firstname.lastname@example.org or email@example.com.
Many thanks for reading. If this is relevant to you, we look forward to hearing from and/ or meeting you soon!
Alice & Cara J