Ordinary Hopes

 

The film Me Before You needs tissues. Plenty of tissues.

Tears rolled down my cheeks as the leading male character, Will Traynor, explained some of his reasons for not wanting to live the life he now had, a life where he can’t even get himself out of bed.

By 7:45am today the tears were rolling through my heart when my son asked me to get him up. I couldn’t. I didn’t have time. I needed to take his brother to school and Daddy had to get ready for work. Some days there is time for us to share the task, with me starting, Daddy finishing but today was not one of those days. It depends when Adam wakes up.

So my beautiful nine year old son had to wait in bed till I returned at 8:20am.

By that time his bed was wet. So very early in the morning to already be failing him.

My heart aches. My head hurts. Some days it feels as though the contents of my rib cage are going to swell so much that they might just burst out of my body.

These moments happen more and more frequently as the days go by. As my boy gets older. As I get older.

Back to the film.

I have not seen such collective crying at the cinema since a large group of teenage girls sat behind me watching Leonardo Dicaprio’s character die in Titanic.

The gorgeous, wealthy and adventurous Will Traynor is paralysed in an accident, leaving him with just a little of use of some fingers on one hand. Two years later along comes the bubbly, funky Lou Clark who slowly brings some sunshine into his shattered world.

But love isn’t enough. We discover that Will has already tried to end his life and plans to travel to the Dignitas Clinic in Switzerland to end his life, his way.

I sobbed inwardly with Will’s mother as she tried to make her son want to live.

There has been much hurt among disabled people who feel that the film is little more that a ‘disability snuff movie’ feeling that it portrays that you are better off dead than disabled, or that it is somehow romantic to love people enough to allow them to be free of you but I saw a beautiful and emotional portrayal of one man’s story. I am sure it is fair to say that most people do adapt but there are others for whom it will be too much. This is the story of one such person. My heart ached for Will as he explained why he did not wish to return to his favourite Parisien café. I felt his pain and I could understand his decision. HIS decision.

Coming home from the cinema I sat with my legs in one place and my arms still. It made me realise how much I move. Try it on a long journey. Imagine it every day.

A person with Will’s needs could not even have come with me to see the film last night.

It was not in an accessible screen. There is a “disabling toilet” but no accessible one. No hoist, no bench. Just a small room with a toilet really.

It is the same at most cinemas, possibly all. I will be fascinated to know of any cinemas in the country who have realised that people with significant physical disabilities like to watch films too. Anyone have a cinema with fully accessible toilet facilities with a bench and a hoist? Do leave a comment if you do!

Think about for a moment. Even when you can physically do very little for yourself, watching films at the cinema should be a pleasure you can still enjoy like before.

 

Where do people take their children on wet days?

Soft play centre? We can’t do that.

Maybe pull on the wellies and stomp through muddy puddles in the woods? We can’t do that, we will get stuck. (We have done that. We did get stuck.)

Maybe a stroll across the beach? Not going to happen.

Maybe a visit to the cinema? Hang on, we really SHOULD be able to do that!

 

I did take my son to the cinema recently.

It involved planning. The big screen has a few spaces for wheelchairs. At the front, stuck out to the side, in that area where they don’t put seats because the view is a bit uncomfortable from that angle. So we avoid that screen if we can.

There are a couple of smaller screens where any seats can be moved from the back row to create a wheelchair space. Much better spot, but you can’t book these online. The back row is always popular though and you can’t generally get seats unless you book early.

So we got our tickets and struggled to get to our seats (and space) whilst carrying his popcorn and small drink and doing our best to negotiate through the crowd. Note I said “small” drink. Oh yes, you would limit what your child drinks too if you had just paid for cinema tickets knowing there were no toilet facilities.

We had made sure Adam “went” at the last possible moment before leaving home. The rest of our row had clearly not used the same forethought as they seemed to do little else than pop to the toilet. It is expected with children, isn’t it?

Quite near the end, my son told me he needed the toilet. Bowel roulette anyone? It isn’t a fun game. We “raced”, well, moved as quickly as we could, through the narrow alley to where we left the car, all the while hoping that nobody would be coming towards us.

Unlock car, activate lift, onto lift, up, strap down wheelchair, close lift. It all takes time. Drive home, open back door, unstrap wheelchair, race to back door (Adam can only get in through the back door) into the bathroom, place 8 separate sling straps onto the hoist bar, onto bench, prepare clothes, switch to toileting sling, hoist to toilet!

Would it really be so difficult to install fully accessible toilet facilities with a hoist and a bench? Not as difficult as it is to be Adam when he needs the toilet and there are no facilities, I am sure of that. Life is already hard enough for disabled people.

We should make this world accessible to all. Why are huge numbers of people excluded from so many joys in life? Why do we all keep going about our daily business without asking questions? Without making it better?

Next time you go to the theatre or the cinema, look around. Are the wheelchair spaces in an area where you would want to sit? Is it possible for a wheelchair user to sit in the middle amongst their friends or are they tagged on the end of a row, slightly apart.

Check out the toilets. Would you be able to turn a wheelchair? Would you be able to reach the sink from a wheelchair? Your knees in front of you and the footplate stops you from getting too close. Is there a hoist to enable you to get out of your chair?

Do you still want that drink before the show starts?

If you work in a cinema, manage one or own one, make it better. Ask yourself  whether “Will Traynor” could come by on any day and see the film of his choice. Could he use the toilet facilities?

Can Adam?

Instead of discussing the rights and wrongs of assisted dying, maybe it is time to discuss the need to ensure assisted living?