Charities and social media, can we help?

Over the last three years almost 10,000 charities in the UK have been forced to close their doors.

In a world of social media it is becoming ever harder to grab the attention of potential clients, consumers, campaigners and customers. And I would like to help.

I am a registered Learning Disability Nurse, with an English Degree, and an apparent flare for running Facebook groups and pages. One page I run voluntarily and solely has over 22,000 likes.

I would like to offer my help and services, absolutely free of charge.

If you would like help to increase your ‘likes’ on Facebook and the amount of engagement your page receives simply get in touch with ‘Changing Places’ on Facebook.

what you need to do

  • Send us a message as to why your page would like some help
  • your page should be linked to learning disabilities, inequality for people with Learning disabilities, and or all other disabilities. Your page can be a campaign page or a charity page.
  • your page should have less than 2,000 likes.

Five pages will be chosen. I look forward to hearing from you.

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Why she is wearing the same T-Shirt everyday for a year, and why we should all be talking about it.

 

Victoria is a Mother to a beautiful girl, who, is absolutely one in a million, one in six million actually actually! Emily has Phelan-McDermid syndrome. Victoria is aiming to wear the same T-shift, every day for every occasion for an entire year. In doing so she is hoping to raise awareness and much needed funds for the charity.

 

‘Phelan-McDermid syndrome is a rare genetic disorder. There are about 1300 registered cases worldwide and our gorgeous daughter is one of them. Emily is non verbal and has no communication skills, she has developmental delay and is functioning at 0-11mths although she is now 4, she has low muscle tone in her arms and legs making it hard and tiring to walk, move around and do everyday activities including feeding herself. She’s a total joy to be around and has taught us so much as parents. We celebrate every achievement to the max no matter how small. Her strength and determination amazes us, we are such proud parents’

Victoria said ‘When my Phelan Lucky tshirt arrives from the US my plan is to wear my shirt for one whole year, all day everyday, every event, any occasion, 365 days!!! I’m doing some research to see if it could be breaking a world record too with Guinness world records, would be amazing to get Phelan-McDermid syndrome in the world record book. I plan to document the campaign with a photo everyday and a flipagram at the end of the year to present it. I will wash it as I don’t want to be Phelan Whiffy, but it will be a quick turn around so I can get it back on ASAP. I plan to get sponsored to do this, raising funds for PMSF UK. I’ll try to get at least £365, a £1 a day, but hoping to get much more than this, but it’s my first goal’ Victoria is currently smashing her goal, but let’s help her raise some more!    https://www.justgiving.com/Phelan-Lucky

 

 

What to do if you’re not okay with this image.

This is Wilson.

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Wilson is five years old and needs Changing Places to be able to safely be changed after using the toilet. Without them this is the standard disabled toilet offered at Churchill Square .

Wilson’s Mum, Zoe did the #‎barefootchallenge at this time, bravely helping to create awareness. This is the reality faced by thousands. I believe Wilson and Zoe deserve so much more.

After this image was shared on the Facebook Page for Changing Places over 125,000 people viewed the photo, and some left negative comments. Negative comments such as ‘this is disgusting, why would you lay your child there’. Before commenting and leaving your comments for the world to see, think about what you want to achieve. Negative comments do not help the person in the picture, they only hurt their loved ones.

If you see this image, and believe that people should not have to meet their continence needs on the floor there are several things you can do.

  • Help campaign! Changing Places would mean that this did not have to happen! http://www.changing-places.org/get_involved/take_action/run_a_local_campaign.aspx
  • message your local  MP and let them know the importance of Changing Places.
  • Do the #barefootchallenge, take a photo of yourself barefoot and explain that you would not go barefoot in a public toilet, so why do we accept people being changed there.
  • Go to the Facebook and Twitter pages for Changing Places, give us a like and a share and help create some much needed awareness.

Do it for Wilson and Zoe.

17 things people will say when you tell them about Changing Places

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Whether you need Changing Places for your own personal use, know someone that does, or just take an interest in Changing Places because you want to campaign for a better world, people will tell you want they think. Often people will also express their opinions without knowing anything at all about you, your life, or the cause.

We’ve all that ‘face palm’ moment when a good meaning shop attendant shows you the baby changing facility when you ask if there is  a  Changing Place. Instead of shouting sarcastically that this is just ‘perfect for our grown adults to be changed on’ we simply smile and do the best we can.

For what it is worth, the best you can is absolutely fantastic. I hope people make time in their day to tell you so. So let’s have a giggle at this list, we’re in this together, and hope there is a day in the future when this becomes irrelevant.

1. “When will he/she learn to use the toilet?” (said about someone who is 35)

2. “you’d think they would do something about this!” (we’re working  on it)

3. “A Changing Place? we have baby changing and disabled toilets?” (yup, so that’s a no then?)

4.” do you really need one?”  ( face palm, no we just thought it would be a nice change from sitting on the toilet)

5. ” what is wrong with him/her?” (nothing at all, we just need Changing places)

6.  ” Oh yeah! I never thought about that”

7. “surely its the law to provide somewhere” (*checks law*)

8. “but what about your back?” (oh it hurts!, believe me, but this is my only option)

9. ” what will you do when he/she gets bigger?” (hope for more Changing Places!)

10. ” tell me about it, there is no where at all to change my baby”

11. “we need these in every town”

12. ” the floor?” (floor, lap, back seat of the car we’re inventive!)

13. “Hospitals must have them right?” (nope!)

14. “I think you’re amazing for what you do”

15. ” no, seriously, you deserve a medal”

16. “it takes more than physical strength to change someone they love on the floor”

17.  “I could never do what you do”… (remember that not all superheroes wear capes.)

 

Equality, let’s act! Toilets for all.

Under the 2010 Act, which replaced the Disability Discrimination Act, service providers (including shops, tourist attractions, restaurants) are required to make reasonable changes – including to the built environment – where a disabled customer or potential customer would otherwise be at a substantial disadvantage.

The Government’s own easy reference guide further states: “You should not wait until a disabled person experiences difficulties using a service.”

And yet, five years after publication almost 1/4 million people in the UK have to be changed on the floor, as there have not been any changes put in place. People with profound and multiple learning disabilities, as well people with other physical disabilities such as spinal injuries, muscular dystrophy and multiple sclerosis often need extra facilities to allow them to use the toilets safely and comfortably. There are only 756 places in the UK where the most vulnerable people in our society do not have to be changed on the floor. As these places have a Changing Place.

Many places such as hospitals, airports, theme parks, and larger shopping facilities have not listened to the guidance put in place by the Equality Act and have NOT installed a Changing Place, forcing people to either be changed on the floor, not be changed and stay in incontinence pads for a prolonged amount of time, or not go out.

There are over 8000 public toilets in the UK, excluding ones we use in cafes, bars, at hospitals, tourist attractions. Yet there are fewer than 800 Changing Places toilets. Beyond the moral obligation, it has financial benefits too: 20% of the average business’ customer base is disabled. Disabled people spend some £80 billion a year! Research shows people choose NOT to use somewhere they believe does not have suitable toilets.

is this reasonable?
is this reasonable?

Every day people will be forced to face the scenario above due to the lack of suitable changing facilities. The Equality Act states  if  somewhere ‘puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled’, they should ‘take such steps as it is reasonable to have to take to avoid the disadvantage’.

The Changing Places Consortium, Aveso, Clos-O-mat and other campaigners believe that installing a Changing Place is reasonable, we believe in dignity, equality and accessibility for all.

If you too, believe that people have the RIGHT to  accessible toilets that cater for their needs, then join us.

If you know of somewhere that should have a Changing Place, let them know- tell them about the equality act and ask if they believe they are making reasonable adjustments. Write to your local MP and tell them the importance of Changing Places. Like us on Facebook and twitter, we look forward to hearing from you.

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Changing Places, the reasonable choice.

Are please and thank you really needed?

I want to talk about manners and people with learning disabilities, and how teaching such things can, in my experience and opinion be quite a dangerous thing.

When someone has a learning disability this often comes with it a communication difficulty, both in expressing themselves and understanding others. Learning how to effectively communicate with words, signs and symbols is not an easy task, and it is up to us as people who care about them to be able to make this process as simple and enjoyable as possible. In my experience, however, I have seen many of us making this harder, simply by imposing our expectations onto them.

For three years I trained as a learning disability nurse, and the one thing I saw time after time that truly grated on me was staff, parents and carers expecting to be thanked all the time. If someone was given a drink this was often followed by the phrase ‘what do you say?’ I was thrown back to when I was a child and my parents were trying to encourage me to have manners, and yes this was an acceptable thing to learn, as a society  we expect to be asked politely and thanked for the services we provide. But is this entirely necessary for people with a learning disability?

Often, when someone with  a learning disability asks for something and is then asked immediately after ‘what do you say?’ they will soon learn that it is the ‘please’ in this instance that has got them what they wanted. The ‘please’ will become the entire question, and although polite, it can decrease their vocabulary and valued skills. Sometimes simply forming a sentence and asking for something is a great achievement, so when we ask them what is next we are telling them that the words they chose, formed and provided are not enough.

I was first introduced to this idea when I was going through my Makaton training, through the Makaton charity. They taught the sign for please and thank you but told us to use this with caution.  the signs should be used if the person wants to, of course if they ask for something and then sign please this should be applauded, but so should the fact that they have taken initiative to use Makaton in the first place. Manners is a lovely added extra, but that’s all it should be.

When working and living with people with learning disabilities I believe it is crucial to engage in their world and to communicate at a level they feel comfortable with. With people with moderate to profound learning disabilities in mind, I ask you, is manners really that important? Please and Thank you are abstract empty phrases, they serve no purpose but to highlight that a polite social exchange has occurred in a conversation where both parties understand that this is a social normative and are happy with that.  someone, for example, who is learning to use the sign for toilet may become discouraged, disengaged and frustrated when they learn that this signal is not enough. What is more, there is the possibility that they will stop using the sign for toilet and will start using the sign for ‘please’.

We do not have to subscribe to this very British way of thinking. By helping someone with something, should it be helping them to the toilet or getting them a drink should be all the thanks we need. So please can we re think the please and thank you?

Thanks.

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Struggling isn’t failing; a note to the general public.

Today, something happened, that has happened countless times before and with no doubt will happen again. I was tutted at by a member of the public and insulted while supporting someone out and about.

The girl I support was putting her coat on after we had been out for lunch, she was struggling to get one of her arms into her coat, and I was simply encouraging her verbally. On the table next to us I overheard one woman say (so I could hear) to the other after tutting and rolling her eyes ‘ you would think she would give her a hand wouldn’t you?’

The girl that I support has essential tremor and can sometimes struggle with everyday tasks such as getting dressed, but believe me, she can do it. What is more she enjoys doing it! over years of being over supported she has lost some of these essential skills, leaving her without the ability or drive to do the little tasks she is so capable of doing. As a team we have been encouraging ‘active support’ and with time she is doing a fantastic job, is gaining independence and is loving this journey.

So when someone we do not know exclaims that she needs a ‘hand’ what does this say to her as well as myself? That she is incapable? That if she doesn’t do a task in the time we expect people to do something she needs help or is doing it wrong?

Although I do appreciate that there is always a time and place to speak up and to whistle blow if you think something isn’t right. Those who receive paid support are amongst the most vulnerable in our society, but really, I wonder what they had hoped to achieve by that remark.

I always have been proud of being a support worker. With only two weeks left in the job I will be sad to leave this role, because I quite honestly love supporting people.

I asked a disability forum if anyone had any similar experiences, and amongst a plethora of replies, this one stood out. ‘My son is ten years old, and has just started to eat on his own, we’ve slowly backed off and now he can eat an entire meal using cutlery on his own, yes he makes a mess, yes it takes some time but he gets it done and giggles throughout the entire process. A few weeks ago when in a restaurant I overheard someone say ‘fancy making that poor kid do that’ my son is not ‘poor’ he is just simply learning!’

When someone requires a support worker, even the mostly profoundly disabled person will often not need every single aspect of their life done and dictated for them.  If you consider the most fantastic building and bridges you can imagine, they all need a supportive frame to make them stand and work. People are the same. We all need the people around us to support us and to help make us who we are, some of us require a little more day to day support, but that support should be active and encouraging and not simply one person being forced to feel like they are a burden by having tasks done for them that they want to do for themselves.

So next time you see someone receiving support when you’re going about your business, try to look again and work out what is actually happening. If you think someone is being mistreated please do say something and do something about that. But please don’t tell me off for doing my job.

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