WHAT ACCESSIBILITY MEANS?
MORE THAN BARE MINIMUM!
Hi, I’m Steph, mum to Ciara 5 and very soon to be mum to a baby boy too.
I’ve never had great health, I was born 12 weeks premature and growing up I suffered hormone imbalances, bladder issues, bouts of mental ill health and I’ve had countless surgeries investigating causes for chronic and unexplained, but very real, pain.
During my first pregnancy in 2015 I was diagnosed with Symphis pubis dysfunction at 16 weeks, a condition where your pelvic joints separate making simple activities like standing and walking, agony. By 25 weeks I was wheelchair bound. Stripped of my independence, ability to walk and generally combat life – my mental health took a turn.
Later came a preeclampsia diagnosis, a horrendous womb infection and a NICU stay with our baby girl.
For the first few months after Ciara’s birth, my mobility returned to some semblance of normal but I was instead plagued with all over body pain, profound fatigue, and left feeling generally unwell for long periods at a time. Though I had suffered unexplained chronic pain before this was different, it was everywhere and it wasn’t just pain. After many visits to my GP, once finally referred to rheumatology, it was confirmed later that year that I have Fibromyalgia syndrome.
Fibromyalgia effects my life significantly, it affects my sleep, days out with my family, my mood, my functionality, mobility and also my cognitive function. Fibromyalgia is categorised as a pain condition and though pain is indeed a huge factor of this condition, impacting my life on a daily basis, it is by no means the only factor.
Some days I am unable to get out of bed, cook a meal, play with my daughter or work, and I am often left bed ridden for over a week every month.
When I found out I was pregnant a second time, I was worried about how pregnancy would impact fibromyalgia symptoms for me. It turns out my worry was valid when again at 16 weeks I was diagnosed with symphis pubis dysfunction and given crutches. Crutches require strength that my chronically ill body doesn’t have and so I am now using a mobility scooter to get around.
The trouble with this is, we live in an ableist society, in a society that is unprepared for ambulatory mobility aid users, a society that believes disabled people can and should live full lives on the very bare minimum of accessibility.
On a good day pre pregnancy, I could do things most healthy people can enjoy, like walk on the beach, eat meals on a picnic bench, go for a forage in the woods and so on. Now I cannot stand unaided I can’t do any of the aforementioned activities. I cannot walk on uneven ground even when supported by crutches. I cannot sit on a chair or bench that doesn’t have a back.
With the easing of lockdown restrictions over the last month or so it has been highlighted to me again with stark reality that society has made the very minimum of changes for disabled people.
A few examples I’ve come across in recent months are, trying to buy a new sofa, I couldn’t view it in store because it was on an upper floor with no lift. I have had to change dental practices because mine is two flights of stairs above a shop, with no lift or ground floor consulting room, and no accessible parking.
Other restrictions include not being able to go on days out with my family and enjoy all of the facilities at farm parks and playgrounds, not being able to meet friends for lunch because the bar or restaurant they’ve chosen only has high stools or picnic benches to sit on, stairs to toilets and entrances without ramps for scooters and wheelchairs. Who knew that disabled people still wanted a life, eh? News flash – we do!
What’s often even less considered by healthy people is the cost accrued trying to live a ‘normal’ life as a person who requires aids and accessibility in order to do so.
Since losing my mobility in pregnancy I’ve had to make changes in my home, including buying a new bed, a bigger car that can accommodate my mobility scooter, a new sofa because I couldn’t lower myself onto the old one. As you can imagine, this has cost thousands of pounds. The only state support I’ve received has been the installation of grab rails and a shower seat completed by my local council.
At the moment nobody is very hopeful about how and if my mobility will return post partum, and even if I go back to ‘normal’ my normal is still disabled, living with a disability that impacts my life regularly.
I’m the first to admit I carried a lot of internalised ableism before I became unwell. Even once I was unwell but still mobile, I had no real idea the implications people who aren’t mobile face every second of every day. Trying to navigate a disabled life is hard and doing it with children is something else.
Many aspects of your day needs to be planned in advance. I find I do a lot of the mental workload now, and offload the physical onto my husband, but though amazing in so many ways, even he has found letting go of inherent ableism particularly difficult.
Since being unable to stand in the kitchen and cook meals, I’m also no longer able to reach into high cupboards or climb on a chair to turn the fire alarm off when the toast is burning at 7am. It doesn’t come naturally to others to think of these things until they experience them and I understand that, because it didn’t come naturally to me either.
Many disabled people are ambulatory wheelchair and mobility aid users, which means they don’t need them all the time. This can be even harder for the general public to understand. But it is a necessary consideration to enable us to live in a more inclusive society.
What I hope to achieve from talking about these topics is to draw attention to the need for more accessibility everywhere, and that doesn’t just mean ramps and lifts, it means adequate seating, it means flexible working, it means baby groups that don’t just involve parents all sat in a huddled circle on the floor. It means automatic doors, lower shelving in supermarkets, accessible holiday parks, considerate parking, paved pathways in green spaces. It means more support for sunflower lanyard wearers…. And so much more.
As a mother it also means teaching our children about equality and inclusivity. It means letting them know that people have a variety of differences and compassion, kindness and consideration are all free, so we can sprinkle it wherever we go.
Awareness amongst other parents is also crucial. It helps us to support each other and find genuine connections in the parenting community for people who might be experiencing similar struggles.
I’m disabled, but I’m still a mother, still a wife, still a friend and person who wants to live just as a fulfilling life as anyone else.
WRITTEN BY STEPH : @DIVAMUMSTEPH