I’m not sure what the chances are of talking to a film
director for TV one week, regarding disabled parenting, and then a couple of
weeks later being interviewed on the phone by the BBC regarding the same issue,
for the average lady.
This recent series of events has coincided with a time of
plentiful celebration of my birthday, and an enormous boost in the arrival of a
surprise bunch of flowers from a company who wanted to send flowers out to
people nominated by others who thought they deserved them. A mahoosive bunch
arrived, the kind of size that required a Tummy Tub to hold them, and I just
was overwhelmed with happy surprise. It felt like a big cuddle had arrived from
the world and it had way more impact than filling two vases to the brim with
beautiful blooms.
Our family got flamed hard by critics when our little boy
was born. We cannot even describe how hard things were, as we are torn between
telling it as it is, and protecting ourselves. We got cruddy treatment after
the birth. Our care plan was disregarded and I was made very unwell by a
combination of neglect and rough treatment from every single professional who
should have been building us up, providing adequate care, and not making us
argue with them all the time.
It can begin to strip you hard when you realise that there
are that minority of people who do not support disabled parents, they undermine
them, and they belittle them, and they act unlawfully to them. It can make it
very difficult to get out there and interact. That massive bunch of flowers
soothed a part of me that cannot help being on the defence, because it’s been
attacked so often.
The first BBC phone interview, I let rip. I told them about
how we were given two hours of antenatal classes, and therefore less than
ordinary parents. I told them about the things professionals questioned; even
when we had already described the solutions we were going to use to parent our
baby. I told them how it felt, to be filled with joy and terror at the same
time.
I got feedback with all the calls – about how I was not
alone. There were many parents calling, frightened and bewildered by their
treatment. How can you run to social work to assess you for your needs, when
they are the ones who will turn that against you? Where do you go for support?
How does all that feel?
Some time ago I led a song in the bounce and rhyme group I
go to with my son. I felt shaky all over as I did it. I felt sick with nerves.
I felt shattered that this was how hard my confidence has been hit. I have
managed an afterschool club with many children passing through. I managed my
own staff, and I coped with a ton of stress in the public eye.
I cannot explain what it feels like for that to be broken
inside you. To be treated like a child whenever I want to get on the bus and the
driver is incredulous that I need the ramp put down. Or that there was a nurse
in my post birth week that refused to let me show her how I needed transferred
from bed to chair my way without turning it into a long debate. Or that there
was a time I was balanced on the edge of a bed, heavily pregnant to use a bed
pan because the nurse did not know how to position me lying down (and refused
to get assistance) and I was left in danger of collapsing and injuring me plus
bump.
It wears you down. Now the flowers did some of the soothing,
but the phone interviews went deeper. I was being asked about all the stuff I
think about all the time. I was being asked to describe my experience and share
what I thought. Then, I was being asked to allow a film crew come into my house
and film my baby and I for The One Show.
I have no idea what the programme will turn out like. As
someone who fears many things, for some reason slap a mike on me, and I am
fearless. As long as my hair was done, I was ready. Of course they could come.
It wasn’t till the night before that I realised it was Sophie Morgan who would
be wheeling into my completely blitzed living room. She is like a babe on
wheels. Very pretty. Very much part of my time being housebound, when I watched
her model along with other disabled women.
This required much layering on of my favourite foundation
and praying the camera would be been kind. Pacing in advance kinda went screwy,
as the adrenaline was going like the clappers. I was buzzing like the mains had
been attached to me all over.
A woman on the bus asked if I could walk at all. I did not
answer her. I diverted her – polite but firm.
A man at mother and toddlers was rude to me, and I diverted
him too. Polite, but firm.
I disagreed with someone at church today regarding how well
the NHS is doing. Polite, but firm. I would normally have stayed very quiet and
avoided the issue.
I so hope this repair lasts. It’s like finding a part of me
that got lost. The part that coped when I dealt with mind blowing child care
issues and challenged care commissioners in meetings to be more consistent in
their guidelines. It was not fearless, and it cried plenty when it had enough,
but it would have lead a hundred songs in a singing group without a flinch.
Sometimes us strong chickens look tough as f*ckety f*ck. We
are so not. Ever cried till you nearly vomit, coz you are so blasted by the
fight? That is sadly the place many disabled parents live – in a terrifying
place. If they defend their needs then they expose their families. And they
fight all the time. I really mean that – all the time, just to cover the
basics.
I told all I could, and spilled my guts, and did not notice
the cameras all around. I did notice getting miked up - that’s all a bit touchy
feely in a rather ho, ho, ho way. My little boy was so angelic even I was a bit
surprised. He loves the camera. He sat for ages in his bouncer and just watched
and he acted like he was on some kind of cute advert for cute babies.
I told Sophie just about all I know – we talked about
equipment (and the lack of it) and wheelchairs and their unique properties and
bus drivers, and kerbs, and the extreme highs and lows involved raising a baby
with alternative methods. I told her more than I thought I would about the
treatment we had. I still aim to explore as much as I can of that on this blog.
Paramount is the need to share equipment ideas.
There was much fascination over the Baby Bjorn sling I use
to carry my son around with me as I wheel. It’s a perfect example of simple
solution meets significant need. It requires an article of it’s own as it is
both an easy peasy yet complex solution. It works beautifully. It kills my
back. It cannot be used when I have a UTI in my kidneys. It is our freedom, and
the best, best feeling in the world to have a baby on your lap. It is awesome
in both senses of the world. I adore us wheeling together. I dread another UTI.
It’s impossible for the medics to understand that my kidneys are part of my
pram.
The sling sums up so much of the issues involved. The right
solution can save so much finance, and time and energy, etc. But it may still
be fragile and open to falling to bits leaving a parent stuck and vulnerable.
It can be both awe inspiring and frustrating at the same time. As soon as my
baby is too big for that sling I will weep. I love being the pram, even if my
ribs have been through agony to the point of unbelievable at times. I hope above all that this is a time where more and more solutions explode into being, and isolated disabled parents feel they are all part of the same drive to better treatment for all.
(I will post up release date, etc when I know, etc.)
Just spoken to BBC, who say that programme most likely out 22nd November and that it looks great. Will keep folk updated.
Just spoken to BBC, who say that programme most likely out 22nd November and that it looks great. Will keep folk updated.
