My letter to cerebral palsy

Chloe is a high school student, who has cerebral palsy. Here, she writes a letter describing the highs and lows of her condition. 

Dear cerebral palsy,

I both love and hate you.

I hate you because you make my life difficult. Every single day I’m faced with challenges because of you. Sometimes I wish you would go away and leave me alone. You trip me up and make me fall, making me do embarrassing things in front of people and having far too much control over my life. I hate you because of the frustration you create when I can’t always do as much as I’d like to, or getting tired far too easy. I dislike the pain that you cause me, and how it never goes away. You don’t exactly make things plain sailing, do you? I know I’m not making you sound very nice, and in the words of John Green – “the world is not a wish granting factory.” However I know this, it’s not all doom and gloom. It’s not all negative and here is why I think that.

I have mild cerebral palsy, which basically means I can pretty much do everything. It just might take me a little longer, or I might do things in a slightly different way (when my hair was longer I used to plait it using my mouth – don’t judge!). It means my left hand and leg is weaker, and might not always cooperate (especially when it’s really needed!). However I have a super strong right hand and leg – which makes up for it (doesn’t sound so bad does it)! I might walk A LOT slower than my friends, and always have a queue of annoyed people behind me. However when I’m in my wheelchair they struggle to keep up! It means I might need a helping hand every now and then – despite being a very stubborn person.

But here’s why I love you. If you hadn’t been a part of my life, I wouldn’t be the same person. I would have never achieved some pretty crazy things which I have. Because of you I’ve pushed myself beyond what I thought was possible. Thanks to you I write this blog, am a charity ambassador, have a Facebook page and have met some amazing people. I have had the delight of meeting the most amazing and inspirational people through this blog and the charity of CP Teens UK. Thanks to you I know Anne Eliot – an amazing author, who writes fantastic books. I love you because it means I can appreciate the little things. Getting through one day without ending up on the floor – it’s an achievement guys! When that one person gets the heavy door which you hate. I love you for not making things boring and normal, for getting me to think outside of the box. Also the queue skipping, that’s pretty great, especially at theme parks. ☻

Furthermore I love you for always wanting a challenge. This month it’s been an Uptown Funk kind of challenge, of the dancing variety. My school was challenged to make a dance video, to the Uptown Funk song- you probably know it well, whilst being filmed around school and here is our response. (I’m about 3 minutes in).

I have to say I enjoyed every single second of it, and would do it all again tomorrow if I could! I’d like to thank all of the members of staff who were involved and made it possible for me to do it. Dancing certainly isn’t something I get to do everyday, making this occasion very special.

Thanks to cerebral palsy I have been able to find the confidence within me and know that anything is possible. If it wasn’t for you, I wouldn’t be who I am today. I would not be as strong without you. Thank you for that.

Yours faithfully,
Chloe
(A student who happens to have cerebral palsy)

Chloe recently shared her story as part of our 100 days, 100 stories campaign.

We want the boys to experience things together, as brothers should – #100days100stories

Martin is a big Manchester United fan, along with his three boys. His eldest son Jordan uses a wheelchair and attends one of Scope’s schools. Martin writes a blog called United Discriminates, and has shared his story as part of our 100 days, 100 stories campaign.

I’m father to three lads. Zac is four years old, Ethan is six, and Jordan is now 17. My eldest Jordan has a number of medical conditions, which means he has learning difficulties, suffers many seizures a day, and uses a wheelchair.  As a family we always try to do our best to make sure that Jordan and the boys get to experience things together, as brothers should.

Football with the boys

I’m a life-long Manchester United fan, and have recently managed to persuade the wife to allow me to take the boys to watch them play. Martin with two of his sons outside Manchester United football clubWe try to make it once a month. I bought memberships for myself and the youngest two. Before I bought the membership for Jordan, I contacted Manchester United, to see how it worked with wheelchair seating.

Manchester United won’t let us sit together

I was met by an email, that stated:

“There are facilities at Old Trafford that accommodate wheelchair supporters in attending matches. However, there is only one place at the side of the wheelchair place for a carer. All carers need to be 16 years of age and over.Therefore, in this case to attend at the same time there will be difficulties i.e. you won’t all be able to sit together.”

You can see that this was going to be an issue.  As I am but one man, and although I like to think of myself as “Superdad”, I can’t really sit in two places at once.  I emailed again and explained that sitting apart was not an option due to the age of the children.  What came next was somewhat gobsmacking to say the least:

“There are some clubs that would welcome you with open arms and possibly ask you to bring as many family members as possible… the downside is it wouldn’t be at Old Trafford, most probably Rochdale, Oldham or Stockport.” (Email from Manchester United’s Disability Liaison Officer)

I literally couldn’t believe what I was reading.  Is this email actually telling a fan to go and watch Rochdale, Oldham or Stockport?  And what made this so called “Liaison Officer” believe that he could say such a thing, to not only a fan, but a paying member, a supporter whose membership and ticket purchases pay for his wage. To say it got my back up is an understatement. And it resulted in a complaint to Manchester United Customer Care Manager, who replied:

“Regarding other clubs welcoming you with open arms, please beA logo saying 'United discriminate' assured that this was not meant to suggest you were not welcome here at Old Trafford. Instead, Phil was referring to the fact that the pressures on disabled and non-disabled ticketing allocations, are differing in comparison with other clubs where this may be less of an issue.”

It’ll cost us extra

The email went on to say the following:

“In line with stadium safety protocols we are regrettably unable to accommodate your request for you and your three children to all sit together as a family whilst watching a game. The alternative is still as previously outlined that you as the father and primary carer for your son to be situated on the wheelchair viewing  platform, and for your two other children to be accompanied by an adult in the seating area just to the front of the platform. You would be able to meet as a family before, during and after the game in the Ability Suite. As stated this would be subject to the availability of any unsold easy access seating, and the adult member caring for your children under 12 would have to be current members and have their tickets charged, which would be the standard procedure anywhere else in the stadium.  Many clubs are in a similar position and we are unable to meet your expectations at this time.” (Email from Manchester United’s Customer Care Manager)

So basically what I am understanding from all of this is that if my eldest son was not a wheelchair user, or had any medical conditions, as a father I could buy four memberships, buy four tickets, sit and watch the football altogether, and enjoy the thrill of a match as a family.

But as a direct action of my eldest son using a wheelchair, not only can my family not enjoy the football together, but we also have to buy an extra membership for another adult, and an additional adult match day ticket? And this email actually says that the reason for this is the stadium’s safety protocols.  So what safety issues are there with me watching the football with my family?

I won’t give up!

I intend on taking this all the way. Not sure where or how,  but I’m hoping that this blog will generate a few options. And I have now set my goal, to get Manchester United FC to change their seating layouts to allow families like mine to sit together.  As it won’t only affect me. A father who uses a wheelchair would also not be able to take his two children to the football, for example.

Banner saying 'Theatre of dreams, Old Trafford - our dream is to watch it togather'

Please spread this blog, far and wide.  If you are reading this because you, like me, have issues getting to sporting events because of disability and access, then I recommend an organisation called Level Playing Field.  They will help you.

Also please follow @utddiscriminate on Twitter.  It’s going to be a thorn in Manchester United’s side until they get their act together and sort out some of the issues they have with discriminating against disabled Man U fans.

Thanks for taking the time to read. I know it’s a rant. But change starts somewhere, and hopefully this is the start of that.

Have you had any similar experiences? We’d really like to hear from you. 

If you want to share your story as part of our 100 days, 100 stories campaign, contact us at stories@scope.org.uk