Still so much to be done

IMG_1327

So we have celebrated that someone cared. Cornwall Services listened and understood.

They told my son that he matters.

It feels fabulous!

Local press have been fantastic at highlighting what this means. The article in The West Briton was really well written and positive and I hope that other businesses will read it and understand what it means.

Alex (manager at Cornwall Services) and I had a couple of nerve-wracking interviews and I was genuinely emotional when I heard him speak about how the entire management team had responded when they heard my request.

I still feel utterly thrilled by all they did.

image

Yesterday, Adam had an appointment at Bristol Children’s Hospital. It is a very long day and the journey home is particularly arduous. We are all very tired.

There is a Changing Places toilet at the hospital now which is fabulous. This is our first stop on arrival.

After the appointment Adam is always keen to head straight home and our next stop is at Gordano Services as they have a full Changing Places toilet. Coffee here is always a most welcome treat, (or is that a Welcome Break?).

Our next stop is almost 60 miles away, at The Hayridge Centre, Cullompton. It involves   going a little out of our way but it makes travelling possible.

After this, we used to have a further 108 miles to travel before the next toilet. We didn’t stop anywhere for coffee or food. Would you want to risk eating or drinking knowing the journey ahead?

Cornwall Services have made it possible to use the toilet again after only 85 miles!

It was after Adam’s usual tea time as we reached the services and he was so pleased to be able to use the toilet, then get a McDonalds and enjoy slurping back his favourite strawberry milkshake.

We don’t take simple pleasures for granted. The final 28 miles home was not filled with stress about whether we would make it home with everyone feeling comfortable and with their dignity intact.

But today is a new day.


 

Today, my son is still faced with a limiting world.

So today has begun with a reply to a major local attraction who sent me a reply which hurt.

I had sent them an e-mail explaining what my son needed in order to use the toilet. We had signed up for a workshop which would have lasted several hours and sorting toilet needs is a priority before we even leave the house.

They replied saying that they did not have any suitable facilities, (which I had expected,   after all, not everyone knows what is needed) but they also said two things which left me hurting.

  1. We are very keen to try and make all of our facilities as accessible as possible and are very proud of our wheelchair access throughout the building. We are obviously reliant on funding to make improvements to our building and will certainly consider your suggestions when looking at future developments
  2. With regard to your visit next week, we are unfortunately unable to provide a hoist at such short notice. I’ve tried to find a room available where you could change your son but unfortunately both the Learning Centre and the Lecture Theatre are booked on that particular day.

So, initially, that sounded not too bad. Then it sunk in.

They will consider my suggestion when something important enough to develop comes up.

Instead of using the toilet, you could soil yourself and clean up after, although not on this occasion as there is no private space.

So, in the early hours of this morning, I finally responded.

“Hi ______,

If I am honest, I was actually quite upset that you mentioned finding a room where I could change my son.

I had been very clear that he needed to use the toilet and I am quite sure that you would never suggest the option of soiling themselves and getting cleaned up afterwards to an able bodied person.

You may not have thought about how it would sound but it was very hurtful.

My son chose to not come to the workshop with his friends. The one we had paid for in   advance and then took a space which another child might have used. He didn’t come.         It would have hurt him too much.

https://ordinaryhopes.wordpress.com/2016/06/19/tell-me-that-i-matter/

The other thing which I would ask is that you don’t wait till there is a future development opportunity. This is surely a development opportunity by itself? People cannot come  just because they have a disability.

The right thing to do is surely to find out what is needed, find out costs and then find a way to fund it?

My son is not the only one who needs to feel that he matters.

There are many more people who cannot enjoy visiting. Wouldn’t it be amazing if Cornwall could be a county of excellence when it comes to accessibility?

Rachel George”

I have no interest in naming the attraction.

This isn’t about upsetting anyone.

It is about a nine year old boy who is already upset. It is about stopping him from feeling “less than”, it is about ensuring that his life feels worthwhile. It is about ensuring that      nobody feels devalued and excluded.

I love Cornwall. I want Cornwall to be great, actually, I want Cornwall to be magnificent for all. That is why I want local attractions to improve. Cornwall could be the first choice of holiday destination for many as well as an amazing place for locals of all abilities.

It is time for some real thinking to take place.

People have been excluded from society for too long.

Cornwall Council needs to ensure that all new builds have accessible facilities in their plans and that all applications for major works use that opportunity to improve. Set the standard for others to follow.

We need grants to be available for non-profit organisations and to help smaller organisations who genuinely want to improve but cannot finance it all alone.

It is time for us to stop meeting “minimum legal standards”.

It is time for Cornwall to shine.

 

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s