One of my favourite lyrics is “I’m holding onto a fairytale. We’re moving forward but we’re not there yet.”
Change is inevitable. Attitudes change. Stigmas get challenged.
There are days where I am grateful to be living in the age that we are in. Though things can be far from ideal, and there is always a long way to go, things in many ways are getting better.
I am grateful for the continued increase in changing places facilities for example.
More of these being available shows an acknowledgement and agreement that people with disabilities do indeed deserve the same toileting privileges as everyone else and to be able to stay out for longer.
I am grateful to the many businesses now incorporating PODD/PECs symbols into their menus and other paperwork so that those who communicate non verbally still have a voice.
I am grateful to the few parks out there that make sure there is something for everyone of every ability to enjoy.
I am mindful that only decades ago, a child with a lesser disability than Amy’s, would be encouraged to be raised in a home for deaf people (or in some other way institutionalized).
I won’t go into it any deeper so as not to spiral into an existential crisis, but least to say progress has been made.
The treatment of disabled people historically has been nothing short of atrocious. Still today I am aware of things happening that should not. It honestly terrifies me and keeps me up at night.
I am ever grateful to everyone out there who has campaigned for change. Campaigned for rights.
They shouldn’t have to, but I am glad that they did.
It is so easy to ostracize and make vulnerable any type of minority but I feel that generally more and more, maybe in the advent of social media and awareness being raised… that more people are being given a platform to make change.
In spite of all of this gratitude, it still pains me that prejudices do and always will exist.
Families like ours live under constant threat of vital services being removed, funding being revoked, changes to benefits and so on.
We already live day to day with medical uncertainties of the person we care for. We make constant almost daily decisions that can be potentially life changing.
I seem to oscillate at the moment from “the world is starting to understand… things are getting better” to then plummeting into a state of existentialism and fear at the state of the world.
I know that it isn’t just families like ours that feel it. The pandemic and other world events have caused so many of us to think about the more severe what ifs in life.
I spent a lot of the last month with heartache over the Ukraine situation. I wonder how on earth a family like ours may fare if faced with that same situation.
A trip to the supermarket is enough of a well planned mission, never mind fleeing terrified from our country.
I suppose it’s all about perspective.
Recently we were informed that our town is finally getting some Changing Places facilities.
I can’t say enough about how much this will transform our days out. However the negative side to this is that when those facilities are closed due to repair issues etc, it feels like the ground beneath me has shattered.
It’s hard when you plan a day so meticulously and account for every eventuality and then you’re faced with the dreaded out of order sign.
It happened to us last week at the city hospital. I had been trying to get a urine sample from Amy for a few hours and was required to transfer her from chair to bench several times.
We are a week on from that day and due to a broken hoist my back is still so tender from that day.
In many ways I’d say in my 8 years of being Amy’s mum, things have changed for the better.
However, the more we go out and access the community the more I am saddened that there are still so so many shops and cafes etc that we can’t go in because of the steps.
I know for many buildings it may not be possible for whatever reason, but it is still so disheartening.
Not having access feeds into feelings of “we don’t belong here”, “we aren’t wanted”, “we have once again not been thought about”. It’s not a nice path to go down and obviously I can be prone to being oversensitive.
I just want to live in a world where everyone has the correct treatment and opportunities.
Where considerations are made to ensure something is accessible and inclusive.
I don’t want to spend my life constantly wondering “will we get through that door?” “what will we do if we can’t change her there?” and so on. My other worry is also people’s attitudes.
If Amy is being noisy and having sensory issues/behavioural challenges, I want for people to understand and accept. I know it isn’t ideal but at the same time i don’t want to have to be nervous of other people’s reactions.
I wish more common sense to prevail.
If somewhere is still "one parent only" due to the pandemic - make an exception for someone who otherwise requires two carers!
This isn't asking for "special treatment", to me this is basic common sense. Let people have what they need to survive and then thrive. Ask yourself if you were in my shoes would you be able to do all of that by
What do you think? Are things changing for the better or the worse?
What changes would you like to see?