Is that really me?

A few days ago I took part in a live discussion on the Victoria Derbyshire show which was being filmed nearby.

It was an opportunity for local people to share the issues which matter to them as we head towards a General Election.

In Cornwall the big issues were not Europe or immigration, but included housing, the level of people needing food banks, opportunities for children, social care, the NHS and equality for disabled people.

I was pleased to be able to share one of our biggest concerns, the lack of Changing Places toilet facilities across the UK.

This issue is limiting the freedom of hundreds of thousands of disabled people and their friends and family, causing many to be excluded from the opportunity to even take part in events like this.

Had my son wanted to come along, he couldn’t have managed to stay for the session as there are no Changing Places toilets in the town where this was filmed. If I not been able to sort childcare, I would not have been able to attend either, as I couldn’t simply bring him son along.

I was pleased at how it went but I was a bit shocked to see the tired looking woman with dark circles around her eyes. She was wearing my clothes and using my voice but I barely recognised her. She looked down-trodden, exhausted by battles which shouldn’t need to be fought.

What happened to the smiley, bright-eyed optimist that I remember?

My body is damaged from lifting another person for too long and not having any time to rest and recover. My back hurts all the time.

My heart aches from knowing that my son hurts.

And I am tired. So very tired.

Not from being my son’s mum or carer, but from the seemingly endless battles for inclusion in parts of life which others take for granted.

And our politicians have known that this is the reality.

In January 2017 there was an adjournment debate in Parliament where Changing Places toilets were discussed. It was an interesting debate and I was impressed at the interest shown by those present. They seemed to understand the serious way that a lack of these facilities is affecting people. Unfortunately, I only counted ELEVEN Members of Parliament at the debate.

Just 11 stayed to listen, to learn or just to show that they cared.

There may have been good reasons for some not being there, but really, JUST ELEVEN does not show that inclusion and equality of access really mattered to our representatives.

The Women and Equalities Committee recently produced a report recommending that Changing Places toilet facilities become mandatory in some developments. I shall be watching with interest to see if those recommendations get implemented.

Until then, the late nights working to get more people to understand are here to stay.

I see the same dark circles around the eyes of parents who trod this path ahead of me.

I don’t want to see them on those who will follow.


Please feel free to share this with your own Prospective Parliamentary Candidates.

Do ask if they are aware that hundreds of thousands of disabled people are being excluded from everyday life by something as simple and fixable as a lack of properly accessible toilets.




24 thoughts on “Is that really me?

  1. You are an amazing advocate, and I admire your energy and devotion. I feel just as you do. Know that you are not alone. I hope we will meet some day.

    Liked by 1 person

  2. Hiya. I will share this with my MP. Who has been around many years and has a child with a (different) disability himself.

    Up here in Tameside I have a friend whose daughter , now age 11 , is in the same position as you.
    We talked about your rent in the mobiloo, she could immediately tell me all the few places she knows that have hoist accessible adult changing. Not one in our local home town.

    You are not alone lovely, but please ‘re energise.., the campaign will still be on going if you step a little into relaxation. Huge hug

    Liked by 1 person

  3. Hi. Interesting that all we ever seem to hear about are levels of immigration, but as you quite rightly say there are so many other issues that affect the country. As a bit of a campaigner myself (although it’s my son who is the real campaigner) & a mother of young people with disabilities I can well understand your tiredness & frustration, but without your ripples no big waves can begin so be assured your efforts are worth it. & I really hope you get the chance to rest and reenergise.

    Liked by 1 person

  4. What a great opportunity to go along and be heard. Such a shame that there was only 11. I share the same tired look as you. You’re doing a fabulous job and all of us that a change would help really appreciate it xx

    Liked by 1 person

  5. You might see a tired woman with black circles round her eyes, but I see a loving mother and warrior willing to fight, not just for her child, but for everyone else. Be kind to yourself. You are doing a fantastic job. Hugs xx

    Liked by 1 person

    1. Thank you. There might have been a small amount of eye leakage reading that. Today has been another long day, 13 hours to do a round trip for a hospital appointment, and it is lovely to sit down and read some of the lovely and supportive comments which have been left today.x

      Liked by 1 person

  6. Good luck with your campaign. Wear your dark circles with pride because you are an amazing mother and do more in your life than many politicians will ever do with their lives.

    Liked by 1 person

  7. Always delighted to see you advocating! Your heart drives you on..although we do need to plan a relaxation evening slot to prevent our total collapse I feel!x

    Liked by 1 person

  8. You see yourself one way, we see you another! You’re doing amazing work and your energy and dedication towards your son, others and to educating us all is incredible!

    Kat x


  9. Continue raising awareness, I think lots of people are not even aware of all the difficulties that disabled and also elderly people face everyday. Hopefully it will change soon, how else can everyone be included and live a socially active life 😦


    1. And that is the reality – exclusion. There is a theme park near me (Flambards) which has a fantastic Victorian exhibition and a wartime one. My grandparents used to love it there when they were more mobile and it is a shame that they are being so reluctant to improve their facilities. My great grandfather needed to be hoisted in his last few years and his care home staff were not able to take him far at all. That is a sad reality which might be faced by any of us in the future.


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