Having covered the Medical Model earlier on in this my A-Z blog, it is now time to write about the Social Model of Disability. Thankfully, this became the preferred model in which to view disability from the 1980s onwards. Rather than viewing disability as only being a problem for the individual who has the disability, it advocates that society has big part to play. There is a video on Scope’s website (Link to the video) which made the point that having the Social Model in existence is liberating for disabled people. Realising that the problems they face are not solely theirs to try and fix but societies.

It was only the other day that the penny dropped as to why it is best to say ‘disabled people’ as opposed to ‘people with a disability’. I have always preferred the latter as in my mind it sounds ‘softer’ but it is seen as reinforcing the belief that disability is very individualistic. This is opposite to what the Social Model believes, arguing, that it is society which causes a person to be disabled. The Social Model separates the terms ‘impairment’ and ‘disability, Cerebral Palsy is my impairment but it is the barriers which society puts up which causes my disability.

I would argue that one of the biggest barriers caused by society is lack of physical access. As I can walk unaided, I am fortunate that I can access most buildings but I get a very small taste of problems when I am using my walker. Coffee shops definitely loose some trade from me because of their failure to provide an automatic door. I have often thought to myself, if the door is open then I will pop in and get a coffee but if it is closed I will go home instead. (Trying to open what is often a heavy door, whilst trying to navigate my walker through is not that easy!)

Attitudes are also a huge barrier which society puts in the way for disabled people. Going for a job would be a good example. A disabled person may be the best candidate but because they are disabled the employer may think negatively (thinking of all the reasonable adjustments which they may be required to make) and therefore they are not offered the job.

Barriers in terms of Communication are also created by society and this was seen when no BSL signing was provided during the Covid briefings. A deaf lady successfully argued that equality law was breached after downing street failed to provide interpreters. I was one of those people who used to watch these live briefings to get the most up to date information during the pandemic – something which deaf people were prevented from doing.

In my post on the Medical Model I wrote about doctors believing that it was their job was to ‘fix’ disabled people. This could go as far as forcing people who did not have an arm, to wear a prosthetic arm so that they fitted in to what society expects them to look like. The Social Model however seeks to value difference.

The other ‘S’ which I can write about is that your surprise that this post is quite short in comparison to others – well, make the most of it while it lasts! (It still has taken me a very long time to post it even though I had drafted it about over a month ago, sorry!)

I was diagnosed as having Cerebral Palsy (CP) when I was nine months old and this was when my affiliation with the charity Scope began, with my parents seeking help and advice. Through this seeking, Mum & Dad learnt about the Spastic Centre which was in Watford – about eight miles down the road from where we live. I have known people to cringe when I tell them that I went to a Spastic centre but the National Spastics Society was the name of the charity and it wasn’t until 1994 that it changed its name to Scope. Given that I was born way back in 1979 I was very much involved before the renaming came about. Along with the name change, Scope went from a charity specialising in Cerebral Palsy to a pan disability charity. I am not the only person who would have liked it to have remained a charity, specifically for people with Cerebral Palsy, but thankfully they have formed a CP network – more on this later!

Although the charity has always been in the background of my life, this post will explain the support which the National Spastics Society and later Scope, gave me in the early years of my life, 1980 – 1984 and then how I have become involved with it again from the year 2020.

As Mum and I are very organised, in terms of keeping records, I can tell you that I started attending the Spastic Centre in May 1980 and left in August 1984. The focus at the centre was therapy and medical input so during my time there, surgery on my hips was recommended by the doctors which helped to ensure that I would not be in wheelchair.

I remember Mum saying how strict they were and we only had weekends and Bank Holidays ‘off’. It was also frowned on if we ever dared to be late something which Mum occasionally struggled with as she also had my 4yr old brother to get to nursery/school. In the school holidays my poor brother had to still get up early, as he was too young to be left at home.

Mum not only had to drive me there in the mornings and pick me up in the evenings but if I had an important therapy session or I was being seen by the centre’s doctor Mum would also drive over for that particular appointment. Mum has often said that the felt she could do the 8-mile journey in her sleep, as she did it so much! It was undoubtedly worth it though as I was given intensive physio and speech therapy, standing me in good stead for later life. To give you an idea of how hard they worked with me, it is suffice to say that I was born right-handed and by the time I left I was left-handed. I think allowing me to remain right-handed would have been better but in the grand scheme of things this is very minor. Dad was also very involved in fundraising and used to do sponsor walks raising money for the charity which was helping his daughter so much.

Having been in this ‘bubble’ for so long probably meant that going to mainstream school was even scarier, for my parents and I but this is something which I wouldn’t have changed. Trying to fit into mainstream society was very very important to me hence my close affiliation with the Spastics Society came to an end. It wasn’t until I entered the world of work and developed a passion for working in the field of disability awareness that Scope became a little bit more prominent in my life. I registered on their employment scheme and I even went for a paid job, with them, which I was offered. Thankfully, Mum and Dad made me realise that trying to commute to Scope’s offices in London everyday was impractical so much to my then disappointment, I turned the job down. Something which I really did not like doing but, as usual, Mum and Dad’s advice was spot on, the commute would have been too much. I also had a connection with Scope in 2000 when I successfully applied to them for a Millenium Award meaning that I was able to launch my disability awareness project, ‘Be Aware Be Clear.’  Around this time, I also did some voluntary work with the Community Fieldworker who worked for Scope and she invited me to do a couple of talks with her – we made a great double act!

Lock down was when my next major link to Scope came about. I remember receiving an email to say that they were trying to establish a Cerebral Palsy (CP) network online I therefore decided to join and have remained a member ever since. I find the meetings very valuable indeed and they have become a permanent fixture in my diary. We meet every 2^nd Wednesday of the month on Zoom and have guest speakers or discussions amongst ourselves about any area of CP. 95% of the members have Cerebral Palsy themselves but we also have people who are parents of someone with CP. Like everything, some months are more useful than others but I often come away with little nuggets of advice. The biggest help was when I learnt about some NICE Guidelines recommending that adults have an annual check-up with spasticity clinics, which have now been set up around the country. Other members of the network were really pleased that this service was available so although going to hospital appointments is not my favourite thing to do, I thought I just need to put my worries behind me and ‘go for it’.  Unlike most people, I seem to cope better with medical appointments on my own, but aware that my speech may be a problem and also wanting to make sure I remembered to cover the main points, I jotted down some notes which I thought would help the consultant get to know a brief history of my life so far. I then decided to write a ‘Wish List.’ Although there was nothing major of my list, there has always been bits of my Cerebral Palsy which have niggled me.

The appointment was SO good! At the appointment there was a Consultant Neurologist, a Physiotherapist and a Clinical Nurse Specialist. All my preparation paid off and at the beginning of the appointment I ended up giving my notes to the consultant, rather than keeping them as a backup for my speech. The consultant went through my notes point by point which really helped to get the full benefit of the hour appointment which I was so fortunate to have. I did not think for one minute there would be any magic pills which I could take to eradicate all my niggles, and I was right. However, what the appointment did give me was time to discuss issues which I knew my GP probably would never be able to advise me on. As a result of these discussions, I came away with a better understanding of my Cerebral Palsy, even learning that I have dystonia – a type of CP which I wasn’t even aware of! As a result of that appointment I have had two follow up appointments with them, at Queens Square, London with another one booked for next month, I have also been able to access excellent support from my local neuro-physio team – including the long term loan of a standing frame. By using the standing frame, daily, it is hoped to provide some relief for my neck, a relatively new problem which I have, as well as helping to improve my posture.

I am therefore so grateful to the CP network for letting me know about the clinic in London. As I am slowly getting older I am feeling that things are becoming more difficult so being able to untap this additional support has come at just the right time. I would recommend anyone who has Cerebral Palsy and is not a member of the network and or has not attends a spasticity clinic that they consider doing both things as both things have been hugely beneficial to me.

 I can see myself being a member of the CP network for years to come, so although I have been involved in Scope intermittently through my life I think it is here to stay, this time!  

Footnote: (To become a member of the network, please email  networkcp@scope.org.uk)

You would be forgiven if you are confused with the title of this post. In a blog which aims to raise awareness of disability, a post entitled Rock Choir is not something which people would expect to find but having been a member of a Rock Choir I can tell you that this post is very much linked to my disability.

I never forget when I first decided that I wanted to visit my local Rock Choir for a ‘taster session’ it was after a very good friend said how much she enjoyed going to her local Rock Choir and that it boosted her social life. My friend confessed to not being a very good singer but despite this, she thoroughly enjoyed it. I emailed the choir mistress, explaining that people had trouble understanding my speech, yet alone my singing. I was expecting her to email me back, asking whether there was a white van waiting to cart me off for having such a ridiculous thought, however, to my surprise, her reply was the complete opposite and she invited me to the next taster evening. A small ‘obstacle’ which I saw being in my way was telling Mum and Dad where I was going. I knew I wasn’t obliged to tell them everywhere I was going but it is something which I naturally do as I have a very close relationship with my parents. The choir met in a local church so I told them that I was going to church. Whether that was a lie or not is debatable but it is what I said. As soon as I got home, I felt so ‘high’ that I phoned my parents to confess where I had really been. Mum totally understood why I had been so liberal with the truth saying that although she would had not necessarily tried to persuade me not to go, she would have been a little sceptical, worrying that I wouldn’t have been able to keep up.

The more I went the more I seemed to enjoy going. There were some evenings when I would come back from work feeling stressed and tired and not wanting to go but knowing I had paid up front was a big incentive to go. On the evenings where I thought I was ‘too tired to go’ I found that I came back home a different person – rather than wanting to go to bed I wanted to carry on singing. I was absolutely amazed at how included I felt. After going to so many things in the past, where my disability seemed to stick out like a sore thumb and I was an ‘outsider’ I was surprised that, at choir, I never once felt anything but fully included. I explained to the leader that standing up to sing would be too difficult and nobody seemed to bat an eyelid that I was ‘allowed’ to sit down. To my utter amazement I was invited to take part in performances and I was even encouraged to sit down during those as well. There was one other member who also sat down but in a choir of almost 200 people, where only you and one other person was sitting down, you would expect to feel singled out but not at all. The only comment was ‘Thank you, you needing to be in the front row, so that you can be seen, helps me to escape from being on the front row!’

What follows next is an article which I wrote for Scope with the hope that it would be seen by other people who have Cerebral Palsy.

——–

After about 4 months of being in the choir I begun to notice that my jaw was locking in the mornings, it was a little annoying but I did not see it as being a major problem as once I opened my mouth a few times it did not lock again during the day. After being the choir for just over a year, it was becoming a little more of a problem for me and it was beginning to lock intermittently throughout the day. After consulting with my dentist, she recommended me to see a Chiropractic which I did and after he spent time with me and looked at the movements of my jaw, he did not feel that he would be able to help me. As time went on my jaw was getting increasingly worse, I was now getting pain when I ate or when I yawned. My dentist was brilliant and after wracking her brains as to whether there was anything which she could do to help she made me a mouth guard to wear at night.

Due to it now causing me significant problems, I asked to be referred to the Oral Max Facial department in my local hospital. It was only now that I was beginning to wonder whether me singing in a choir was causing the problems. At my Oral Max appointment, they did not seem to jump to the conclusion that it was the choir but we both agreed that it would be a good idea for me to stop going. They also recommended that I went on a soft diet, obviously hoping that doing these things would prevent it from getting worse. I followed the order of a soft diet to the letter, unfortunately it coincided with Christmas and having a Christmas dinner which had been through a liquidiser is not something which I would recommend. Mum also liquidised my roast dinners – these were fine but I think with all the extra trimmings which you have at Christmas just did taste nice, all mashed up. Unfortunately, the soft diet and me stopping choir did not help as the pain just seemed to get worse. I obviously did not go back to choir but the doctor said that I could stop the ‘soft diet’ so I ate normally again all be it having to have my food cut up into very small pieces. I was taking pain killers which were bitter sweet – they significantly helped with the pain but due to them also being a form of an anti-depressant I needed to stop my existing anti-depressants. As another bit of background knowledge, the anti-depressants which I am on are a relative low dose and the best way in which I can describe them is as them being a cushion. I wouldn’t say I suffered from depression to a large extent but I think, as most people with Cerebral Palsy would agree, life is not always easy with people’s attitudes as well as the amount of energy needed to live with a disability. A cushion is therefore probably a good way of describing the benefit I get from taking them. When I had to stop them in order to take the necessary pain killers for my jaw I realised how much I benefited from them and I therefore begun to struggle with my mood.

My doctor then prescribed me some different tablets for pain relief which meant I could restart my anti-depressants, meaning that I went through quite a good period. After being on these for a year and a half I decided to stop them as I was wondering whether they were suppressing my appetite and also I wondered whether the pain had miraculously decreased. I’m glad that I did stop them as I realised that the pain had indeed gone!

As time went on, I begun finding it difficult to eat, for example, eating a pizza took me well over an hour, there was no pain but taking this long to eat it took all the pleasure out. Due to the Oral Max team not really being able to help me they referred me to the Orthodontics department. At my Orthodontic appointment they confirmed what I had thought had happened. Due to my jaw having moved, (which is probably why I had a year of being in pain) my teeth no longer met together and I therefore now have a Class 2 Anterior Open Bite which explained why eating a pizza was so difficult!

Treatment was the next thing which we discussed and replacing both of my jaw joints was the only option. The consultant who I was seeing was very experienced – he was the only surgeon in the South of England who does this operation but he was not willing to do this operation on me. Due to my Cerebral Palsy he said that the risk of paralysis was too great for him to consider operating. As Mum and I came out of the consultation we were obviously bitterly disappointed and I did decide to seek a 2nd opinion – unfortunately the 2nd consultant said the same, surgery would be too risky.

I am a firm believer in turning negatives into positives and this is exactly why I wanted to share my story and my main message would be if you notice your jaw beginning to click, review what you are doing and seek advice early. No one has directly linked my jaw deformity to my singing in a choir but I am sure this is what caused it. As I was enjoying my time with the choir so much I didn’t realise how much of a strain I was putting onto my jaw. I wouldn’t want to deprive anybody from the lovely feeling of being in a choir which made you feel so welcome but I would say think twice!

——

Having a jaw deformity is impacting my life, especially my eating, having to think twice about what I can eat easily and what would be too much of a struggle for me to eat. ‘Going out for dinner is therefore not as enjoyable as it used to be and I am finding it difficult to maintain a healthy weight. I have just (March 2024) had an appointment with a dietician who is going to prescribe me some shakes to help to boost my calories

People say there are seasons in life and this is exactly what Rock choir was for me – a season. I had a wonderful time during the 18 months when I was a ‘Rockie’. Do I wish I’d made the link between my jaw problems and singing sooner? Absolutely but hindsight is a brilliant thing!

Fortunately, I did not want to use the letter ‘R’ to write about Regular Blog Posts as I have let a lot of time lapse between this and my last post – apologies. I also apologise if this post is not as light hearted as other posts – it is more of a ‘professional’ post which I hope to use at work.

Being willing to make Reasonable Adjustments for people, with disabilities, is one of core requirements of the Equality Act 2010, my job therefore requires me to promote Reasonable Adjustments within the work place. After doing some research, I found that a lot of employers have a document for employees to use so that they can request the adjustments they need.  This document is quite commonly referred to as a Disability Passport. Not liking the negativity which is often associated with the word ‘Disability’, we decided to call it a Reasonable Adjustment Passport (RAP) which is now a section within the wider Supporting You Passport.

People may argue if your manager is happy with your requests then why do you need to put them in writing but as with most things, having them in writing is always best. The biggest benefit of having them in writing is that it makes thing easier if you have a change in manager. Your new manager is able to see what adjustments your previous manager had agreed to and will therefore hopefully follow through with these. Similarly, if you are moving jobs then this is your document to take with you. The rest of this post will go through the sections of the RAP, which I designed, using the template that NHS Employers use, giving examples of the type of requests which can be put in each section. These examples are based on both personal experience as well as experiences from members of staff I seek to support:

Time:

This section can be particularly relevant for those who rely on taking painkillers at regular intervals throughout the day.  While waiting for the tablet to work they may find it easier to take a longer lunch break and then make up the hours later in the day. Another very good example, is from one of my colleagues who finds driving in the dark extremely difficult due to her eyesight. She therefore has an agreement with her manager that in the winter months she will leave early but make up her time during the summer months. This arrangement was made before working from home was an option so this adjustment may not be needed now, but it is a good example of what flexibility can be offered.

Environment (fire, blue badge parking):

Being able to work at home is a Reasonable Adjustment in itself and this could go under the Environment section. Unfortunately, I hear of many cases where a manager is not allowing the person to work from home despite there not being a valid reason why they can’t work from home. Working from home is so helpful to me and something which I now find myself taking for granted.

In the Environment section, it is always a good idea to state if you have a blue badge. Having this documented would help if you ever found that the Blue Badge parking spaces were full and you therefore needed to try and find alternative parking. The alternative parking may be a considerable distance from your office meaning that not only would you be late in but you may also be in pain, needing to have a rest before starting work. Rather than trying to explain this on the day when there is a risk that it may be seen as an excuse for lateness, if you have already mentioned it in your RAP then hopefully no eyebrows will be raised.

As a personal example, in this section of my RAP, I have stated how difficult it is for me walk from our office onto the main hospital site (a walk which takes me approximately 15 minutes and is uphill!) I have therefore stated that when I have a meeting on the main site then rather than being expected to walk back to my offices, I will base myself on main site for the whole day.

Within the ‘Environment’ section there is also a question to prompt the member of staff that, if they have problems which their mobility, they need to ensure that they have a Personal Emergency Evacuation Plan in place.  More guidance as well as a link to the PEEP document is then given.

Technology and Equipment:

Within my RAP I explain the need to have two work laptops. Due to hybrid working, there is now an exception that you will carry your work laptop in, every time you work on site. Carrying a heavy laptop would be something I would struggle with, putting me at more risk of falling. It was therefore agreed that I could have one laptop which I keep in my locker at work and one laptop which I keep for when I’m working at home.

Communication:

This can be used for people who due to their disability find work instructions emailed to them rather than just being given verbally.  I use this section slightly differently…

When I started working from home, I was really worried that if my manager wanted to get hold of me and my phone was on silent then they wouldn’t be able to.  For people who have read my post on ‘Jumping’ then you will remember that a simple phone call can make me jump. If I happen to be drinking a cup of tea when the phone goes then I can end up spilling all of the tea down myself. I’ve therefore put in my RAP that my phone is often on silent mode and although I look at regularly the best way to reach me is to message me on MS Teams.

Buddy:

Although this was not in the template which I was basing our Reasonable Adjustment Passport on, I felt that it was very important to include. I have had times when I am sat in the office knowing that I need to call up the IT helpdesk but wanting someone on standby to speak on my behalf, if necessary. I would therefore end up ‘wasting time,’ trying to find someone who I felt I could ask. This is where the idea of having a buddy came from. When you come to discuss the RAP with your manager then by ticking the box, to say that you would like a buddy, you and your manager can think about who would be best placed to be your ‘go to’ person. I’ve also added a prompt that if there is anything you could help them with, in return, then there is space to expand on this. It may be that you make them the odd cup of coffee (if this is something you find relatively easy to do.) 

Emergency Contact

When I was asked to add this section in to the Reasonable Adjustment Passport, I was a little hesitant to include it, as it was assuming that if you have a disability then it is more likely that you will be taken sick at work compared with your colleague. I did however allow this to go in as it could prove to be very useful,

Additional info

This is the section which I find particularly useful. Most of the things which I want my manager to be aware of do not fit nicely into the sections detailed above. Some of what is included under my ‘Additional Information’ section is that I rely on a taxi to get into work. 95% of the time this does not cause any problem but if I ever struggle to get a taxi and I am therefore late in then this will be the reason. Although this is not a Reasonable Adjustment per se, it is something which manager needs to be aware of. I have also recorded in this section, that I have a permanent problem with my jaw, meaning I find it difficult to eat and so need to take a slightly longer lunch break. Trying to explain this to a new manager, then my worry would be that they would see it as me wanting a longer break. However, because it is in writing and also having had it agreed by your previous manager then it is less likely that any questions will be asked. It is a sad but true fact that disabled people are more likely to go through disciplinary hearings so having a Reasonable Adjustment Passport can offer a bit more ‘protection’.

I am hoping this post will be read not just by people who have kindly signed up to receive my posts but also by people in my work place. Therefore, if you are reading this trying to decide whether to fill a Reasonable Adjustment Passport in or not, please can I encourage you to do so. None of the sections are mandatory. If you just fill in details of your disability/long term condition and then use the ‘Additional Information’ for the little, but important things – then it would have been a half hour well spent! After all you never know when your manager may change so even if you have an informal agreement with your manager, in terms of how you work and then they leave, you would have wished that you had put it all in writing.

Trust me I am a Disability Champion!

Welcome to my 2^nd post, exploring some of the questions which I have been asked following the talks which I have given to children. I mainly give these talks within a school setting but I have given talks in other settings, for example talking to scouts and brownies. This post will provide answers to the questions which children have asked me relating to my day-to-day life and when I was at school.

Questions relating to my Day-to-Day life

What is your daily routine? I was asked this question long before working at home was an option for me and I therefore used a standard day at work. I mentioned how, due to relying on a taxi, I always need to be ready at a set time. I know ‘being ready at a set time’ is the case for most people who work, but knowing that there is a taxi waiting for you adds more pressure.

I also used this question as an opportunity to explain the little strategies which I use, throughout my day, helping me to overcome things which I find difficult.

How difficult do you find life? I can remember exactly when I was asked this question, it was when I was working full time which was putting a huge strain on me. The honest answer, back then, was 50 – 50 meaning that I felt like I was struggling 50% of the time.

If I was asked the same question now that I am working part time, the answer would be very different probably indicating that I ‘only’ find myself struggling 30% of the time. The reason for this big difference is that I now have more time to rest. Also being able to do chores over the week, rather than having to leave them all until the weekend is a great help. Being able to work from home and using a walker when I go shopping are also reasons why things seem much easier now. I would however definitely say it varies day to day – depending on how tired I am then some days still seem more of a struggle than others.

Do you find it difficult to use the keypad on your mobile phone? I take this opportunity to explain that like most things in life I have found ways of making things easier. I use the ‘drawing text’ method when sending messages or writing notes on my phone. This was something which I picked up through a friend and other people have since commented how easy it looks. As always practice makes perfect but as long as your finger touches most of the letters in the word which you are trying to spell then hey presto! (Please note – you do need to download the correct keyboard app for this to work.)

How do you manage to dress yourself? I explain that on the whole I do not have any problems with dressing myself because I always buy clothes which I know I can cope with. There are certain items of clothing – particularly blouses which I do not wear as doing up the buttons would be too difficult. I find doing up buttons on trousers can be difficult so wearing trousers with elasticated waist bands are easier. About 20 years ago I would have had to ask Mum to take the button off my jeans and replace it with a hook and eye but I find I can do these up now – determination is a great enabler! I do have one pair of trousers which I struggle with a little bit more than others, but as long as I don’t wait until I am desperate, to go to the toilet, then I am fine. 

How do you put your earrings / bracelet on? As my bracelets are all elasticated, have a spring ring clasp or are ones which I can leave on all of the time then I don’t have any problems. Earrings on the other hand are based on luck as to whether I ‘hit’ the hole. Earrings are always the last thing which I put on meaning that, if I am wearing them I either did not need to rush to get out or I was lucky and found the hole relatively easily! In terms of necklaces, Mum and I discovered magnets a few years ago and these work really well. Mum has to fasten the magnet to the necklace, in the first place but once it is on, I can put on and take off the necklace to my heart’s content!

Questions relating to my school days

Which did you find more difficult? Primary school or Secondary School? It is quite hard for me to remember but I think secondary school was probably easier. The reason for this is probably because the children were that little bit mature and I was probably a little bit more confident in myself.

How old were you when you had your first friend? Probably about eleven or twelve – I did not enjoy a close friendship until I went to secondary school. Also, unlike most children at secondary schools I was not in a big friendship group so it was mainly just my friend and I. This was also true throughout my education. Friendship for me has always been about quality as opposed to quantity.

Could you take part in PE? In both primary and secondary schools I was fully supported by my welfare helper in PE.  I think the arrangement was, if I could participate with what my class was doing, I would, but if it was too difficult, then I would work one to one with my welfare helper. Examples of me participating with my class involved me being put in goal for hockey and practicing shot put, ready for Sports Day.

When trying to keep up with my class was going to be too difficult, then in primary school, my welfare helper went through exercises which my physiotherapist had recommended. In secondary school I was able to join whichever class was in the school’s swimming pool.

Did the bullying stop? Yes and no. As you mix with older children then the bullying does start to lessen to a certain degree. However, when answering this question I try to make the children aware that unfortunately bullying is not exclusive to schools it can also take place in the work place – something which I have also experienced.

How would you recommend children are made more aware of disability? This was asked by an adult but I thought it was good to include it here. One of the key things would be not to ‘shy’ away from the subject. I use the example, of a parent who is out with their child who sees someone with a disability and asks why they appear to be different in some way. I would recommend that instead of trying to avoid their questions encourage how they are seeking to understand difference (even if this has to wait until you get home.)

Although in my last post I was keen to show that Be Aware Be Clear is not exclusively for school children. I want to use this post to look at some of the questions which I have been asked following my talks to children.  Children seem to ask the best questions after all!  

As you can probably imagine, I have been asked lots of questions I will therefore use this, and my next post, to explore some of them. In this post I will cover the questions which I have been asked specifically relating to Cerebral Palsy (CP) and those questions which children have asked simply because they are curious. I have obviously supplied the answers as well – sometimes going into more detail than I did when it was asked by a child.

Questions relating specifically to CP:

Is there anyone else, in your family who is disabled? No. I explain that unlike some conditions, which are genetic, this is not the case with CP. Me turning around in my mother’s stomach was just an ‘unfortunate’ occurrence.

Does it hurt to talk? Mostly no. When I had all the trouble with my jaw then sometimes talking was painful but fortunately, this is no longer the case. Very recently though I have found that the more talking I do the more unclear, and harder, it seems to become. I think this is caused due to my jaw being mis aligned.

Will your CP get worse? Technically, no. CP is a non-progressive condition however, when I went to the CP clinic, for general advice, they mentioned the post impairment syndrome. Essentially this can be fatigue, due to people with CP needing to put more energy into their day-to-day life. The body can also experience premature ageing due to the daily strain which people, with CP, exert onto their muscles and bones

If your brain was starved of oxygen, how did you survive? In all my talks I try to share a bit about my Christian faith. I do this by explaining, in my introduction, that there was a pivotal moment in my childhood when I began to believe that God made me disabled so that I can raise disability awareness. Coming to this belief therefore helped me to find purpose in life.

This question asking specifically how I survived, if my brain was starved of oxygen, gives me the opportunity to go further. Firstly, I acknowledge that yes surviving birth was not a given but I believe it was God who made sure that I survived!

Can able bodied people get CP later in life? (or are you just born with CP) Cerebral Palsy is only caused before birth, during birth or within the first 5 years of life.

Before birth it can be caused by environmental factors such as what the mother eats or drinks during pregnancy. During birth it can be caused by the baby being starved of oxygen, which is what happened to me. It can also be caused within the first five years of life – if the toddler contracts a serious illness, such as meningitis.

 Questions out of curiosity:

Are any of your friends disabled? Yes, I do have friends who also have CP and I find my relationship with these friends to be quite special as we can share tips. For example, my friend who has a similar type of CP to me, shared how when she sends text messages, she uses the ‘drawing’ text method. After she told me about this, I gave it a go and lo and behold it really does help.

What is the one thing you can’t do, which you would like to do? To this question I answered ‘to be able to ride a (two-wheeler) bike.’ I always imagine being able to go off on a bike ride in the country must be so relaxing. I really enjoy the times when I go to parks where you can hire three-wheeler bikes as instead of putting all my concentration into what my feet are doing, I can look up and enjoy the view. I am not sure that I would give the same answer today as having my walker helps me to enjoy walking more but, riding a bike was definitely the thing which came to mind first!

Are people horrible to you? People were definitely horrible to me when I was at school and I used to be bullied most days. For example, when I was at secondary school my friend noticed that someone had stuck a label on my back, saying ‘I am a cabbage.’

Even today, although it is much less common, I still get people being horrible. One of the worse cases which I remember was when I was in the hospital canteen (where I work.) I fully realise that I am not the quickest thing on two legs when it comes to paying, but on this particular occasion the man behind me was getting inpatient and told me to hurry up. For some reason I showed him my work badge, thinking about it, I am not sure why I thought him knowing that I was a member of staff would help but… At which time he replied, ‘People like you shouldn’t be working in a place like this.’

If you were Prime Minister, what would you do? Make sure there is at least one Changing Place in every town or city. For those of you who are not aware, a Changing Place is needed for disabled adults who require help with personal hygiene they are out. The Changing Place is a much larger facility than the standard accessible toilet and it will often have a bench where the person can lie down if they need their carer to change their incontinence pad. The importance of these facilities were highlighted to me when I heard of a disabled person not having the freedom to leave their home long enough for fear that they would need the toilet. I have also heard horror stories of people being forced to lie on dirty toilet floors.

Do you play basketball? On the face of it this seems to be a very strange question but I think it was asked by someone who had seen the footage which the BBC used to use between programmes. Three or four Paralympians were shown playing basketball, while the announcer told viewers about the next programme. The fact that I was asked this, shows the role media can play in positively portraying disabled people.

For those of you still wanting the precise answer – no, I do not play basketball!

I am aware that I have written quite a bit about my work with raising disability awareness amongst primary school children and you would be forgiven in thinking that I only try to raise awareness in schools. I therefore wanted to write a post about my work with companies and other organisations.

The presentation which I give to companies begins very similarly to the annual talk which I give to year 12’s at a local secondary school. Exploring some of the assumptions people make when they meet me and then speaking about the facts of having Cerebral Palsy. The second half of my talk however, focuses on personal experiences of both finding work and staying in work, sharing some of the frustrations which I face.

One of the frustrations which I share is around job adverts. When I was looking for employment, I found that about 95% of job adverts state, ‘Good Communication Required.’ I don’t know whether there is a word count on job adverts but if only one word could be added to the advert either ‘Written’, or ‘Verbal’, then as a jobseeker, this would have increased the number of jobs which I felt that I was able to apply for. While I do not particularly have good Verbal communication, I believe that I have good Written communication. (Given that 51 of you follow this blog and others read it via Facebook, I think my written communication is pretty good!)  In my presentations, I therefore challenge organisations to really think about the specific skills which they need when writing a job advert.

I am also very keen to talk about how creating an inclusive environment is vital for fostering good working relationships. The best example I have come across is the ‘Did you have a good weekend?’ question. I have been in an office where the answer to this question varies greatly even it is asked on the same day – ie a Monday morning. One answer would, be ‘Yes, did you?’ whereas the other answer is ‘Yes, I went to that new restaurant, they do lovely food, have you tried it…? I think you would agree that the 2^nd answer is more friendly and therefore inclusive! Unfortunately, it is the first answer which I tend to get, signalling that people just do not want to make the effort engage in conversation with me. I cover many other topics but I do not want to write about them all here, in case there is a company, out there, who would like me to present to them either in-person or on MS Teams.

Hertfordshire County Council is one of the organisations who have invited me to speak on more than one occasion. Sometimes they have asked me to present to the HR Team whereas other times it has been to the Adult Care Services. I was able to tailor the Adult Care Services presentation even further and I addressed the question, ‘If I had a Social Worker – How Best Could They Support Me?’ I have also really valued the opportunity to speak at conferences, one of which was run by Scope, promoting inclusion of children with special needs into mainstream schools – another passion of mine.

Whilst I try to keep my Be Aware Be Clear work separate to my work at West Herts NHS Trust there are occasional overlaps. Last year I was asked to speak as part of a webinar run by NHS England, the organisation which works on promoting equality within the NHS. The webinar was all about employing people who have disabilities. Presenting to the Trust board at the hospital, which I work for, has also been a privilege. I was asked to do this back in 2015 when I was working in Quality Governance and they have invited me back this coming April to speak from the perspective of being the Trust’s Disability Champion.

Whilst my focus is definitely on schools, especially now I am trying to promote my puppet work, I hope this post has helped you realise that Be Aware Be Clear is definitely not only for school children! If you would like me to speak to a company/organisation which you are involved with, please email me or pass my email address on to the most relevant person heidi@beawarebeclear.org  

This post is going to be slightly different, as I want to use it to give more information on my puppet project so it will actually cover three ‘P’s’ in one! Publicity of my Puppet Project!

In January 2021 when Home Schooling was in place again, due to the Covid 19 pandemic. I decided to record myself giving two talks, one aimed at primary school children and one aimed at secondary school children. I put these recordings onto YouTube and emailed a few schools to let them know that they were available. *

Unfortunately, this work not take off But my Primary School version was seen by a local vicar (who was also a puppeteer) and he got in touch with to ask whether I would like to do some work with him and his puppet. His idea was to break my talk down into short puppet episodes. Those of you who know me, know that I don’t like to turn down new opportunities for creating Disability Awareness. I therefore said ‘yes’ and sat down to write the first episode.

At the very beginning of the first episode the puppet laughed when I started talking but, Instead of him being afraid to ask ‘Why?’ he was brave enough to ask me why – Why did my speech sound ‘funny The rest of this episode sought to address assumptions which people (especially children) often make when they meet me for the first time. These being, that Cerebral Palsy is an illness, that all of my friends have Cerebral Palsy and that I can’t do things which other children enjoy doing, for example, going swimming. At the end of the episode the puppet, whose name is Karl, apologises for laughing saying that he is now used to my speech and he won’t laugh again.

After writing the first episode, I had a Zoom call with the puppeteer. We spent the first part of the call reading through the script, he suggested come minor amendments and we then hit the ‘record’ button! This was the format of every subsequent Zoom call, although 95% of the script was what I had written I did sometimes change some of the wording to reflect his comments. We had a running joke that most of my scripts were more than one page in length and the whole idea was for them to be short episodes. We therefore worked together removing anything we could, without removing key messages. (Most episodes are between 4 and 5 minutes.) It is also worth noting that although I would love children to watch all of the episodes, each episode is stand-alone so they can dip in and out.

In total there are 11 episodes and each episode presents as least one important message. These messages range from:

Disability does not mean that you can’t do anything at all – it just means you need to find different ways to do certain things. (Episode 2.)

The importance of being determined and not giving up when things are difficult. (Episode 4.)

The importance of taking time to understand why people are different and not excluding people who are different. (Episode 6.)

That there are a whole range of different disabilities and some are ‘Hidden disabilities.’ (Episode 8.)

Episode 10 is Karl introducing me to his friend who is named Burt (In this episode therefore there are two puppets and me (A huge thanks to the second puppeteer.)) Similar to when Karl met me for the first time, I scripted for Burt to also laugh at my speech. Burt said to Karl ‘, you didn’t tell me that Heidi can’t talk properly’ and Karl immediately corrects him by replying, ‘Heidi talks differently, but she still talks properly.’ This episode covers a little bit of new material but the main objective is for Karl to help Burt to understand about disability therefore encouraging children to share with others what they have learnt.

The last episode (Episode 11) was an important one for me and puppeteer to film as it covers my Christian faith and how although I cannot help with the serving of teas and coffees in my church, I can serve by using other gifts which God has given me. I also share two of my favourite bible stories with Karl.

I have written a guide for teachers to use, if they want to do follow up work with their class. In the guide, a short introduction to each episode is given, and I suggest three follow up questions which will help to reinforce some of the messages which the episode gives. For example, after the episode focusing on determination, I suggest the children are asked, what three things I said that I needed determination for. (The guide also supplies the answers!)

As I said at the beginning of this post, I really wanted to use this section of my blog to publicise this project. Although I know it has been used in one or two schools as well as Scout groups which gave some very good feedback it is not being used as widely as I would like. Therefore, if you are reading this and you are connected to a primary school or a youth organisation, such as Girl Guide or Scouts please can you forward them this link and encourage them to download my free resource. I think Sunday Schools would also benefit from this resource, as I mentioned above each episode can be watched as a stand-alone therefore episode 11 would be great for churches to use.

Acknowledgements: I would like to Rev A Janes who worked with me on this project as well as  Kevin who helped to record episode 10 with Rev A Janes and myself.  

* Links to talks which I wanted to be used when home schooling was in place

Secondary School and General – 50 minutes

Primary School – 24 minutes

I feel so lucky that I love being with people and going out with people but equally I also really enjoy being out on my own. Before I start, I do want to say, if you are reading this and we go out together then I do not want this to stop!

When I was trying to decide what to write about for my second ‘O’ post I contemplated writing about the need to be so organised when you have a disability – so I want to briefly touch on this first. I think Being Organised should be in the job description for all people with disabilities and it is needed for a variety of reasons. For example, booking carers, cancelling carers (when people go away), booking assistance for train journeys and the list goes on! For myself, however, it is mainly because I can’t drive that I need to be organised. I always have to think about the next day, how am I going to get where I need to be. This maybe a text to my taxi driver to confirm that I need their services to get to work or texting a friend to sort out a lift to church events. I am so grateful to have so many brilliant friends and a brilliant taxi driver but this constant need to plan can be tiring in itself. If I drove some aspects of my life would be so much easier. Back to the main topic for this post, one of the advantages of going out on my own, especially if I do not need to be somewhere at a set time, means I can just leave when I decide to on the day, not having to have one eye on the clock. I love days out on my own for this reason.

When I am out with other people, even if it is with very close friends, I am often frustrated with how long everything takes me. One example is in a shop and paying for my shopping – I seem to take forever to pay and get my purse safely back in my bag, whereas other people seem to be able to do this so quickly. I know my friends will help me but I like to be independent, so if my friend offers to help, I can often be too quick to say ‘No thanks, I can do it.’ However, I do not want people looking at my friends and judging them as being a bad, unhelpful friend. On my own none of these conundrums arise, if I go to a self-service check out (which I often do) I can just relax and take as much time as I need. I can then politely apologise to the person behind me, when I’ve finished, if I feel like I have kept them waiting too long.

Although I have never been out for dinner on my own (there are some things which I would not want to do on my own) having a sandwich or a coffee out on my own is something which I really enjoy. So much so that I try and stop myself doing it too often, trying to save it for when I want to treat myself. When I am with other people, I think I unconsciously worry about making too much of a mess. A good example of this happened only the other day. I had ordered myself a hot chocolate and then realised I’d forgotten to put my trusty drinking straw in my bag. Rather than worrying I would spill it which would have probably made me more likely to spill it, I just thought I will be careful but if I do spill a bit then I’m not embarrassing anyone other than myself. Another example was, when I had a sandwich which I probably would have hesitated more about having if I was with someone, as I knew the filling was more than likely to fall out all over the table. It’s not that I like to make a mess when I am on my own – I just seem to feel more relaxed.

Over the last few years I have realised that the actual process of eating is much easier when I am on my own. This is for two reasons firstly a problem with my jaw meaning that I no longer have a very good bite and secondly my tendency to cough when I eat. A Speech Therapist has recently explained that my coughing happens, due to my dystonia, which is caused by Cerebral Palsy. Due to my dystonia I find swallowing more difficult compared to other people who don’t have dystonia leading to me having an excess of salvia. I therefore have to make a real effort to swallow in order to ease the coughing. Although I am a woman and I believe that I can multi task my body disagrees and as the Speech Therapist said, eating, swallowing and chatting over a meal is something my body finds too much. I would never stop going out for dinner (I like it too much) but I do have a new strategy. Depending on where I am and who I am with I often order off the children’s menu which means I can eat slower and I am not spending the last 20 mins of a social occasion eating on my own. I’ve also recently found that going for the vegetarian option also helps me to enjoy going out for dinner.

Technology has been great when I am out and about on my own as Google is only a click away! When I was having an appointment in London, I was able to find my way on my own by using my phone and this in itself gives me a huge boost to my confidence. I always prefer to go to appointments on my own and I’m always to be early for appointments but I do not like the ‘waiting part’. When I am on my own however, I can just go on my phone and play games. Similarly, when I am treating myself to a ‘solo coffee date’ I relax by getting my smart phone out and playing games or looking at websites.

As I said at the beginning of this post, I love being with people and when I recently stayed with my brother I almost did not want to leave! I find that sometimes I do have a love/hate relationship with being on my own, if I have a weekend to myself then my default reaction is often ‘Who can I try and meet up with.’ I am however very conscious not to text all my friends like a lonely person looking for someone to go out with. I suppose this is how I have come to realise that I do enjoy being on my own and that it is ‘OK’ to be on my own.

Online Services have become a huge part of all of our lives and are very beneficial to many different people but I think Online Services benefit people with disabilities to a greater degree. In this post I want to outline some of the Online Services which I have found to be very useful.

Prior to apps such as UberEats and Deliveroo, ordering a take away was only something which I would do when I had a friend with me who did not have a speech impediment.  The thought of phoning up and successfully communicating, my food order, my address, and perhaps my payment method (if I was not going to use cash) would have been a nightmare. Whereas now, although I only very occasionally order take-aways, I know that the option is available to me. I made use of this service one time was when I had a friend, with a similar speech impediment staying with me. On reflection I think we both got over excited about the ordering being so easy that we did not consider how to get the take away out of the bag that it was tightly packed into. Instead of having the idea of cutting the bag open we just tried to dive into it and the lids of the containers went flying and so did some of the food. (It did give me an excuse to order another take away at a later date to check that I could successfully get the food out without dropping it, and I could!)

Knowing that I can order a taxi without needing to speak to the taxi company is also revolutionary. The other day, for example, I knew I would benefit from having a taxi so I simply took out my mobile phone, pressed a few buttons and hey presto a taxi arrived. Not only did I not have to explain where I was but they also knew, from what I had inputted, where I was wanting to go. The cherry on the cake was not having to fiddle about with cash as the taxi fare is automatically taken from my nominated bank account. (Getting cash out of my purse and handling change is always less easy for me due to my poor fine motor skills.)

Very controversial I know, but I also quite like the e-consult form which I now need to fill in if I want to request a GP appointment. Rather than hoping the doctor will have the patience to fully listen and understand me, I can put all of the information onto an online form. Obviously, this does not suit everyone and it wouldn’t suit me if I was really ill and needed advice there and then but as most of my requests are ‘routine’ this system really works well for me.

Although Online Services, which mean I do not need to worry about whether my speech is understood are probably the most beneficial to me, services which save my energy are also a great help. Staying on the medical theme, being able to log onto my NHS app and order prescriptions which are then delivered to my nominated pharmacy is something which I try not to take for granted. Not that long ago I would have had a fill in a paper form and ask my parents to take it into the surgery for me, but being able to do it all online helps me to be as independent as possible.

Last but not least, online shopping is also another service which I find has its benefits. You will be forgiven if you automatically think of supermarkets but this is the type of shopping, I enjoy the most as it is relatively easy and productive. I love walking around with a trolley, getting all the things I need (and usually a bit more – food does have the habit of tempting me!) and then job done. Whereas shopping for clothes is not so easy – walking around, hoping that something catches my eye seems to make me tired just thinking of it! Therefore, if I want a specific item of clothing for example a black coat, I sit comfortably on my sofa look at the options online and then make my purchase using ‘Click and Collect.’ Amazon is also a shopping service which I find incredibly useful.

The good news of course is that as technology develops so will online services which will be benefit so many people!