Co-production: We should all try it

Today, I read that Essex Council had engaged in a 100 Day Challenge, run by the charity Nesta, that has focussed on giving decision-making power about people with learning disabilites and autism to the service users themselves. Thanks to this challenge, they have supported the start-up of a book club, an accessible magazine detailing local events, inclusive cricket matches and a monthly drop in centre providing information and advice for people with learning disabilites and autism.

Also, Essex County Council now employ “Nick’s Rule”, which is a short but explicit set of rules that state how everyone can be involved in decision making, including service users. This was inspired by Nicholas Bunyon; a member of the team supporting the 100 Day Challenge as part of a supported programme for young people with learning disabilities and autism.

All this was done by simply asking service users what they wanted. That was all it took. Asking “what would you like to see/do/be a part of?” and actually listening.

When I read about this, my thought process was initially about how fantastic this idea is, but then how disappointing that it is seen to be a new idea. It seemed like the perfect solution to so many issues, and should, in my eyes, be the first thing you do if you are creating services like day provision. This should be standard practice, but it’s incredibly encouraging that it is being taken on at a County-Council-wide level, as it has proven how real change can be implemented from a bottom-up level.

However, whilst sat on this high horse of mine about how it is clearly an obvious way to develop successful provision, I came to a very embarrassing realisation. I’ve actually never done it myself.

My older sister, Dorothy*, has a language disorder and learning difficulties associated with Hydrocephalus; a condition that causes too much fluid in the brain. In her late 20s, she happily attends day provision 5 days a week and does different activities every day. The two services she accesses are absolutely phenomenal in ensuring a service user’s time is well spent doing activities that are not only enjoyable but also productive (she’s not too impressed when there’s a bit of hard labour involved sometimes, but that’s just life I’m afraid). She loves the time she spends with her friends and boyfriend, gets to continue her hobbies of cooking and art (she is infinitely better at both those skills than I will ever be) and clearly gets a say in everything she does. But I’ve never actually asked her myself. I’ve never asked what her favourite thing is to do, or what she would do if she won the lottery and could do whatever she wanted, or what she specifically likes about the people running the service.

But why? Am I worried that I’ll give her ideas that will then be unachievable? Do I think that by asking her, I’m only going to make myself worried that life won’t live up to her expectations? Or have I just taken the approach of “I can see she’s happy, that’s enough”?

All of these reasons are completely ridiculous, but it showed me easy it is to fall into the trap of ‘if it ain’t broke, don’t fix it”. The fact that an entire County Council took this approach of giving the responsibility of decision making to the service users, therefore, is incredibly encouraging.

So, if you’re like me and you completely agree that co-production is an incredible idea, and that this project has hopefully led the way for other localities to follow suit in positive practice, and that the service users who were part of the project were very successful, have a little think. When was the last time you asked the service user closest to you about their views? You may have accidentally fallen into the same trap as me, and that’s a trap we all need to get out of.

P.S. Have a little light reading about what I’ve talked about, treat yourself:

Inclusion is our personal responsibility

I recently watched a video about a man in Yeovil (Chris Samson, Man About Town) who does specialised haircuts for children with sensory processing disorders. He describes how the process of getting a haircut is actually incredibly overwhelming, and how he does all he can to break the process down and make it easier for a child to cope. His take on inclusion is just one simple sentence, “I will do what needs doing”.

Firstly, it’s a fantastically heart-warming watch that restores a little faith in humanity. You can see how Chris does a phenomenal job at making something is tricky as getting a haircut as easy as possible, which absolutely made my day!

Secondly, and the best thing about this story, is that he doesn’t make a sing-and-dance of it. The barber shop isn’t specially equipped with sensory toys, it doesn’t have visual timetables, it doesn’t have any sort of Alternative and Augmentative Communication. It just has a man doing his very best for his clients.

This, in my mind, is what Inclusion should be.

I am a firm believer in the environment being adapted for a child in need, don’t get me wrong. But this video showed me that inclusion isn’t just about a child ticking our boxes, and people implementing strategies that some guideline somewhere says we should do. It’s about an individual changing their behaviour to match the individuality of the child. Not getting bogged down in the particular nature of a condition and what additional extras someone says are required. It is as simple as being slightly more patient whilst trying to maintain a form of ‘normality’.

This really struck a chord with me. I’ve always seen inclusion as all the fancy bells-and-whistles that come with an EHCP  list of recommendations, for example, but this man has shown me that actually, inclusion is simply making yourself a little more flexible and showing respect. You don’t need to be a specialist to make that happen, you just need to be understanding and know that not everyone is going to abide by the way things are normally done. You also shouldn’t have to expect somebody to come with a manual on how to treat them, just use a bit of common sense and let go of how you might normally do things. Sometimes, it is just as simple as letting someone stand by the window instead of sit down.

So, #ADisabilityPositive does come out of this. It gives the perfect example of how somebody has said “I want you here and I want to help, so let me do my best to suit you”. This, in my mind, is the best way to be inclusive for those with additional needs.

I didn’t help

I read an article the other day that really changed my perspective on inclusion, and how the attitude that I had was wrong.

It’s an article by Tanya Marlow, entitled “Don’t tell your child not to stare at disabled people, we are already invisible enough”. In it, she describes how parents should use the opportunities presented by a child’s interest to have an open conversation about difficulties some people may have. Instead of saying “Don’t stare, it’s rude”, she says that it’s the perfect opportunity to point out that not everyone is the same, but they are still able to access society. Telling children not to stare is completely counter-productive in terms of promoting inclusion, as it conditions children to not look at people that are a part of our society. It conditions children that people with special needs should not be looked out because they “don’t count”.

This is something that I am ashamed to have contributed to. As a child, I used to get angry that other children used to stare at my older sister, so much so I would glare back. Petty, I know, but I was around 8 and thought it was the best way to deal with it. In my mind, other children were treating her like a zoo animal to be gawped at, and it just frustrated me. I stopped staring when I grew up, quite frankly because I was used to it, but I’ve realised now that what I was doing was showing other children that she shouldn’t be looked at.

This article brought a fresh light to me in to how inclusion should be seen and dealt with. Inclusion is having an open conversation. Inclusion is about asking questions as you would to anyone. Inclusion is about being honest and admitting you don’t know enough to treat someone fully inclusively. Staring at someone because you’re annoyed they’re staring at your sibling is not inclusion. It’s completely hypocritical. By staring at someone else, you’re excluding them from a walk of life that they need to know about.

So, Tanya Marlow, this is post dedicated to you, and the fact that you have shed #ADisabilityPositive light on the fact that children are going to stare, and this is the perfect time to encourage inclusion. Children aren’t warped by the world yet, so they should be brought up to know who they share society with. These are the people who will pave the way for inclusion in the future, so let’s use their curiosity to society’s advantage.

P.S. Give it a read, she’s a clever lady.

Words Matter

If a member of staff in your Office used racist language in conversation, someone would pull them up on it. If a member of staff in your Office used sexist language in conversation, someone would pull them up on it. If a member of staff in your Office used homophobic language in conversation, someone would pull them up on it.

If a member of staff in your Office used language offensive to people with special needs, would someone pull them on it?

From my experience, no. It’s not that people believe using offensive terms, such as s****** and r*****, are right or correct, it’s just that they don’t realise how offensive these terms are. Using this words to describe someone maybe being a little slow, or too drunk, is used more flippantly (in my opinion) than words that are racist or sexist, which people are more likely to think twice about using. You hear it mentioned in songs, television and in general conversation without the backlash that other forms of offensive language would generate, because those who are being disrespected might not understand that they are.

This is wrong.

Just because some people in a minority group of society might not have the cognition to understand how they are being discriminated against does not make it okay. Awareness movements such as #MeToo, Pride and Black Lives Matter do fantastic work in making people understand how their choices may affect other people, but these groups simply don’t exist at the same level of recognition for those with special needs. This, again, does not make it okay to be inconsiderate. It is not the responsibility of those who are discriminated against to make it obvious to you, it is your responsibility to understand what you are doing and why you shouldn’t do it.

So this is a plea to anyone who has heard this language or witnessed this sort of discrimination and has just let it slide. Do not. Explain the level that it is offensive, explain that it offends you, and explain that others should be offended too. If we can start with the smallest words, our attitudes to those with special needs can start to change. They’re not a forgotten group who can be easily disrespected in conversation. They are an important part of society, and our choice in language and action must reflect this.



#ADisabilityPositive: Blue Badges and Changing Perceptions

In case you missed it, the criteria for having a blue parking badge in the UK have changed. This means that people who find going out difficult, such as people with ASD or mental health issues, can have one part of the journey eased by having an accessible parking space. Firstly, this is a fantastic further step in equality, as it recognises that it’s not just physical disabilities that can become a barrier in going out.

There’s also a second reason why this change in criteria is #ADisabilityPositive. Now that it is commonly understood that people with Blue Badges do not necessarily have a physical disability, hopefully the public will stop looking for people who “look the part”.

It’s a big issue in the UK, that those with hidden disabilities, including mental health issues, are not considered in the same way as those with more obvious disabilities. It seems only right to let someone in a wheelchair use the lift, for example, but not as obvious to let someone in first if they struggle with waiting due to a hidden disability. This is something that has to change – it needs to be understood that there are people who may not have an obvious disability, but it doesn’t mean they don’t have one. People are very willing to be kind and generous when they can see that they have to be, but are far less likely to help and be patient when they can’t see that there might be a good reason to be.

As much as disability equality needs to come a long way from everyone, people need to be forced into realising that disability affects people in so many different ways that aren’t always visible. It’s not their job to make it more obvious, it’s your job to think outside the box and consider that there may be something you can’t see.

Also, people don’t realise how hard it is to get a Blue Badge. You have to qualify for one, so not even everyone who deserves one can get one. This means that the next time you see someone leave their car, who doesn’t “appear” to have a disability, realise that they do. You can’t see it, but that’s okay, it’s not your business to. If we start accepting that all disability isn’t visible, we can make a further step towards equality by understanding there are things you might not understand. This is why I hope that the change in the Blue Badge criteria can be a starting point for a change in disability perception in the UK, as it will hopefully make others think a little bit more about what they can’t see rather than revert to assuming that someone isn’t deserving of the support they are receiving.

#ADisabilityPositive: Bilingualism and BSL

This post is in light of the amazing work done by Daniel Jillings and his family. Daniel is a 12 year old boy who is campaigning for a GCSE in British Sign Language (BSL), which is his first language. This proposal, although initially rejected by MPs after the Education Minister stated that “not everything needs to be taught” (?!), is now potentially going to be considered by MPs before the next election. Firstly, congratulations to Daniel and his family, as this is an incredibly exciting opportunity and something that is definitely needed in the UK. It takes an incredible amount of determination to make people stand up and listen, so well done for making your voice heard!

The idea of BSL as a GCSE, although intended for those who are first language users, gave me a thought about how beneficial this would be for the everyone. Sign Language seems to be massively under-represented in the UK, despite being a language that thousands of people use daily. So why can’t teenagers learn how to communicate with their peers and other people around the country, in the same way that they’re taught French or German?

A spokesperson from the National Deaf Children’s Society said that up to 45,000 children who used BSL as their first language wanted a BSL GCSE. As there are over 4000 secondary schools in the UK (according to Google), that would very roughly suggest that are around 11 children in each school that use BSL. That means we have potentially 11 Language Champions in every school that can be proud of the language they speak, much like English as an Additional Language (EAL) students are currently.

But the benefit wouldn’t just be for BSL students. Let’s face it, who can actually remember every component of their GCSE language studies? It could be argued that the reason England is so pants at teaching languages in comparison to European countries is because  we don’t have the same opportunity to practice within the classroom setting, as well as not feeling the need to use it when we visit other countries. By teaching BSL as a GCSE, it could potentially mean that children become far more proficient, as they have more of a reason to use it in the UK.

If this was the case, and all children had the option to take a BSL GCSE and actually use the language they are taught, then there is nothing but positive benefits for them. Being bilingual means that you have a longer attention span and a better ability to multi-task than those who only use one language, as well as teaching the importance of inclusivity in the UK. There are also benefits in the work place, which would then have a knock on effect on the inclusion of BSL speakers in the work place.

As you can tell, I’m getting very excited about this prospect, and think it’s nothing but a clear benefit to include BSL in the curriculum. So #ADisabilityPositive for this week is not only the potential inclusion of thousands of BSL users in the curriculum, but the potential benefits to other children and then society as a whole. It’s campaigns like this that show what positive things can come from considering the attitudes of those with an additional need, which is exactly what we’re about.

(P.S. has the full story if you want to give it a read).

Painting the Smile on

This is a post for all the people surrounding those with any sort of additional need, whether it be a physical disability, mental health, or SEN. The immediate and extended family, the supportive friends and those who work in the profession. Even those strangers who help without realising.


This is something that is not said enough, or if it is said, it’s said without truly appreciating what you do. I think it’s fair enough to say that the support for all these people in the UK is not consistently available from government services, and so it is just down to you. It’s your patience, dedication and ability to see the positive in a whole lot of negative that makes you truly incredible, and a real asset to the lives of those you support.

Again, we have a bit of an annoying habit as a society where we don’t know what to say if a family, for example, is struggling with the care needs of someone they love, especially if they have additional needs. Because we don’t know what to say, we revert to the pity of the person with whatever need, saying things like “Aww, bless them!” when we’ve just been told a story from a parent about how their struggling with their disabled child. This immediately sends a tide of guilty feelings, as they’re made to feel horrendous for ever thinking negatively of the person they’re caring for. That also completely misses the point of the story.

This is not fair. If the person you care for in your family was typically developing, you would be able to express how they’ve really wound you up. It’s a fact of life – children can sometimes be irritating, siblings are expected to argue with each other, and parents sometimes get to the end of their tether with everyone. It’s a completely normal part of the family unit to wind each other up, say things you don’t mean and just get really frustrated. This should not change if the people involved have some sort of additional need. They have developed their own personality just like everyone else and this does mean they may develop traits that are unbelievably tiresome. It happens. You are allowed to point this out.

Instead of us pitying the individual, we should be praising the family/group of friends/support network even more highly. They have to work arguably twice as hard to ensure that the person they care for is happy and healthy, and do far more to ensure that they stay calm than they maybe would for someone who is typically developing. They appreciate all the extra steps they have to take to accommodate for whatever need the person may have, all whilst trying to maintain positive. It’s like being a member of staff at Disneyland, except from your only relief is when you’re asleep.

They’re work is relentless and often without thanks, and because they do it so well, it seems that external services don’t seem to recognise how tough it is. So I wanted to take the opportunity to thank all these people, because these carers are just incredible. Sometimes that smile of yours might not be truthful, but it shows how much work you put in and how well you’re coping, and you truly are doing an amazing job. Thank you.

#ADisabilityPositive: Honesty is the Best Policy

The big sticking point in why those with any sort of additional need are seen so differently is because any positive part is completely overlooked. When people don’t know much about a disability, it seems to be a default position to become sympathetic and say something like “that must be so hard”. I’m not denying that it is hard, as there are so many barriers to overcome, but why not talk about some of the positives? What’s wrong with admitting that there are some good sides to something seen to be so difficult? So, in the spirit of having the Friday Feeling, let’s talk about a positive that comes with having a language disorder: brutal honesty.

Some context. My sister has a language disorder as part of her condition, meaning that she struggles a little bit with all the complex bits of language. This is the sort of stuff like understanding additional meaning, following conversation and all the social conventions that the rest of us find a gigantic pain (such as asking someone you don’t particularly like how they are because you “have to”). This does make a lot of things difficult for her, especially as language disorders are an invisible disability, so a lot of people assume she understands more than she does and she can sometimes get a bit stuck, BUT it’s phenomenally helpful in a variety of situations. For example, saving yourself a bit of cash and managing relationships without the faffing about.

A couple of Christmases ago, we were all opening presents and she opens an absolutely gigantic box of really fancy smellies, as well as a huge box of chocolates. She showed us the tag, and it turned out they were from her boyfriend. We all said how lovely that was, and how she had been spoilt, and then I asked her what she bought him.

Her reply? “Nothing. I didn’t want to get him anything.”

I immediately burst out laughing at this point. As she doesn’t understand the social convention of buying presents for other people if they’ve bought you something, especially a boyfriend, she genuinely did not feel the need to buy him anything. Yes okay, it’s a tad harsh, but whereas the rest of us would be wracked with guilt, she was perfectly content with getting lots of lovely presents without reciprocating. She saved herself some cash and didn’t panic herself about what to get him, instead focusing on her family and other closer friends. Personally, I wish I could get away with doing something like this, especially when it comes to people like work colleagues and in-laws, so her ability to take the stress out of Christmas seems to be a bit of a win.

Her attitude to relationships in general is also quite enviable. She once told me on FaceTime that she might dump someone because “they’re a bit boring”. Why not! As good of a reason as any! Whereas I spent over a month in turmoil feeling horrendous at the thought of dumping my ex-boyfriend, trying to think of lots of valid reasons to try and ease being broken up with, she simply understood that she wasn’t happy and did something about it. Her language disorder means that cause and consequence are very tricky, but this ensures her own happiness and means she doesn’t over-complicate things like the majority of adults do. Again, it means that she can be a brutal and won’t “soften the blow”, but it means that she knows her own mind and is able to communicate her needs in a simple, unambiguous way. Brilliant.

Having a language disorder means that, although she can’t follow any sort of complex conversation, my sister is able to do things that make her happy and enjoy the company of others without having all the social conventions of what to say and what not to say. #ADisabilityPositive for her, therefore, is that she only spends time with people she likes, does things that she wants to do and doesn’t worry herself with having to conform to social rules that can really irritate other people.

(P.S. A little tip if you’re ever in the company of someone with a language disorder, don’t be polite and ask “does anyone want the last biscuit” when you really want it. If they want it, they will have it. Why wouldn’t they? You’ve asked if anyone wants it, it’s your fault for not being blunt.)

Sharing is Caring

Have you ever had the experience that you’ve tried to say something, but no matter how hard you try, people just don’t seem to be listening? Maybe it’s been when you’ve been in a business meeting and that irritating colleague won’t stop talking over you. Maybe it’s been when you’ve had a difficult conversation with a partner and they’re just ignoring your point of view. Maybe it’s been with your parents, and as hard as you try they just don’t seem to understand you.

Or maybe it’s because you have a Special Educational Need.

This is one that doesn’t seem to spring to people’s mind. A recent statistic said that 1 in 8 people globally had some form of SEN, but when was the last time you spoke to someone with one? I suppose you never really know when you have or haven’t, as with many things, but I’m sure if you think about it, you may struggle. Those with SEN, unfortunately, seem to fade into the background beyond childhood, when they stop being in mainstream education and make their way into adulthood on a completely different path to your own. And yes alright, we all have those school friends we haven’t kept up with as they have done the same thing, but surely an entire community cannot go unnoticed by the general population?

So this is what I’m here to do. I am somebody whose family member has moderate special needs, and through the experience of living with them has come to learn how truly disenfranchised they are. Having shared their story with friends and colleagues over the years, I have realised how a lot of people don’t understand what has happened or what is happening in the world of Disability Rights in the UK because they don’t know about it. Not their fault, but still not right.

This is not to say that those with SEN are fundamentally voiceless. They aren’t at all; in fact, they have some of the most beautiful voices to be heard, and often the most shockingly honest. In writing this, and encouraging others to share their views, I hope to show how extraordinary these people are to more than those in their immediate social and family social. If just one person goes away knowing something new, or considering an opinion that they did not think they would, then that’s absolutely fine by me.

So, in light of this, sharing is truly caring, so if you ever stumble across this and have a story to share then please do so! If not, and you’ve never stopped to consider the view of someone with a SEN before, then please have a little read. You might surprise yourself in that you consider an opinion that you never thought you would. Treat yourself, it’s quite a fun thing to do.