Welcome to another long-awaited post, I don’t know where the time goes! There always seems to be something else going on when I plan to write my next post. Spending time with family and friends definitely but I have also been able to make a few contacts with schools. In the last couple of months these contacts have been fruitful as after meeting the SEN teacher I have been asked to give talks, on MS Teams, to different classes (years 4 and above.) If you know of any primary school teachers, please do pass on my email address heidi@beawarebeclear.org and I would be more than happy to have an initial meeting with them. One of the beauties of doing this work online is that the school does not need to be local, so no excuses!

Soon after I started my job as a Disability Champion for West Hertfordshire Hospitals NHS Trust, I learnt about the Sunflower Badge Scheme. This is a scheme which promotes understanding of non-visible disabilities using a very simply concept. The person with the non-visible disability can buy a Sunflower Lanyard or a Sunflower Pin badge from https://hiddendisabilitiesstore.com/  which they can then wear when they go out. It is hoped that by wearing the Sunflower symbol,  it will make others around them aware that they may need a bit more patience, support and/or understanding. The scheme was founded in 2016, after Gatwick Airport realised that they were only assisting people with visible disabilities but realised that some passengers have non-visible disabilities. The airport started to wonder how they could help these people too.

It is common for people to choose to wear them when they go shopping or when travelling by public transport but through talking with the members of the Disabled Staff Network, I learnt the value of them within the work place. I have heard people comment that sometimes their colleagues do not fully believe that they experience pain when walking, meaning that they can only walk slowly. This can lead to people implying that when walking to and from meetings they are deliberately taking longer than they need to. One advantage of me having a visible disability is that my walking speed has never been questioned!

Realising the frustrations of people, I made it my mission to introduce the Sunflower Lanyards into the hospital Trust but it was not as easy as I was hoping as I met opposition from senior people. Wanting all staff to wear the same lanyard was the message which I was getting. Like most things in life, I became determined that I would introduce the Sunflower Lanyards somehow.

Fortunately, my manager at the time shared my positivity about introducing these to the Trust and within the first year of us having them, approximately 40 people have requested one. The reasons for people wanting one range from wanting their colleagues to be a little more understanding of why they may seem ‘different’ to other people. Another reason has been to help people to understand that their limp is not just due to a temporary injury for example a sprained ankle but rather that their limp is caused by a genetic disability. After knowing it is linked to a genetic disability they won’t ask silly questions like ‘when will it get better!’

Due to being passionate about the scheme I have spent time reading the information which is on the Hidden Disabilities website. As well as the lanyards and pin badges they also supply ID cards which can be attached to the lanyard. These ID cards can then be used to inform people exactly what disability the person has and then on the back of the card, more information can be given. For example the front of the card could say, ‘I have dyspraxia’ then on the reverse it may say ‘Please be patient with me, I may need more time to process and remember information. My balance and co-ordination may be affected and I might bump into you.’ You can also create your own card so that it has more personalised information. You also have the option of including a photo and an emergency contact number.

My only real concern about the scheme is that it could be open to abuse. When I ordered 50 lanyards and 50 pin badges, for work I simply emailed to say that I was a Disability Champion and wanted to buy some to give to employees who are living with a hidden disability. Prior to sending me this bulk order, I wasn’t asked to sign to say that I will only give these to people who have identified themselves as having a non-visible disability. My other concern is that these lanyards may now solely be linked with people not being able to wear a face mask. Although this definitely is one of the reasons where wearing a lanyard could be useful it is not the only reason. The website identifies the most common conditions which people have which then led them to buying a lanyard. These conditions include, having a mental health condition, having a neuro-diverse condition or having a condition which causes chronic pain.

For more information I would recommend that you visit the website https://hiddendisabilitiesstore.com/ where there are lots of interesting blogs, as well as the possibility to do a search for places, in your local area, who have committed to being understanding of the needs of people with invisible disabilities. There is also a very interesting podcast which you can follow called ‘The Sunflower Conversations’ where the hosts interview people with various different Hidden Disabilities. Each episode aims to raise awareness of different disabilities but also to share the success of the scheme. One of the interviewees said that when airport staff have seen her wearing the lanyard the staff really have gone out of their way to help.  I have listened to a few episodes so I would also recommend this resource to you.

As I indicated above when I said that the speed of my walking has never been questioned, I do believe that having a visible disability is often easier than having an invisible one. With me what you see is what you get!

One of the reasons why I decided to write this blog is to help people to gain an insight into my life, not only the big challenges which I face but also the little challenges as well. One of the little challenges that I face is the regular need to buy new shoes. As with most of my writings this is based on my own personal experience but before I begin, I want to acknowledge that I know footwear can be challenging for lots of different people. I know two people who need specialist shoes to help to provide them with the support which they need. Having enough support for my feet is also definitely a criteria for me to consider, when buying new shoes, but there are also other things which I need to consider…

Most people go shopping for shoes when their shoes are almost falling to bits but this is not the case for me! Long before my shoes fall to bits the toe area of my shoe gets worn. When my socks are getting wet when it is raining I then know it is time to go shopping for new shoes! Despite growing up with the words ‘heel, toe’ and/or ‘pick up your feet’ ringing in my ears (which even to this day my Dad often says to me) my shoes just do not last. I know I am not the only person who often get their socks wet, I remember meeting up with someone else with a similar type of Cerebral Palsy as me and I asked her whether she ever has wet feet. She looked at me like I’d just asked a silly question and that having shoes with holes in almost went hand in hand with having Cerebral Palsy.

Going back to when I was younger, I used to wear shoes which were specially made for children who dragged their feet and they had a reinforced toe which definitely made them more ‘Heidi proof’ I wore these, most if not all of the time. They were definitely the shoes which I wore to school and to brownies. It is a little different now that I am an adult as they do not make these type of specialist shoes for adults. As well as needing a ‘solid’ toe I also need to consider the fastening. I think I’ve shared in a previous post, that the right hand side of my body is weaker than my left meaning that I have very poor hand control in the right hand so tying shoe laces is out of the question. Growing up I have definitely found that it is quite common to see Velcro on children’s trainers but it’s much less common to find it on adult trainers. Fortunately, though a genius developed elastic laces which are brilliant. I am increasingly finding though that the shoes which have elastic laces tend to have very thin sole. I therefore only wear these when I know I haven’t got a lot of walking to do. Just when this was beginning to really frustrate me, not being able to find shoes which ticked both the boxes – good durable toe and shoes which I could get on and off myself I remembered that tucked in the bottom of a cupboard I had some ‘lacers.’ These have been brilliant as although I do need to ask someone to help me to put the lacers on the original laces they work a treat, making the shoes easy to get on and off. The other type of ‘fix’ which my friend uses are plastic toggles on her laces – I have yet to try these but if my lacers stop working then I will look into getting some toggles!

I nearly named this post new shoes but I decided to go with the title, new footwear and the reason is that I also wanted to briefly mention slippers! Yes, even with buying slippers I need to think twice. The reason being is that my flat is quite modern and has wooden floors. I always remember when I moved in I constantly felt like I was sliding around and was frightened about falling over. It was then I realised that before buying slippers I needed to look at the soles. I found the perfect slippers soon after I moved in which have a good grip on them so I tend to wear the same style of slippers. They are also very good as they have a very strong toe so unlike shoes, they last a long time. The only disadvantage is that they do look a bit ‘grannyish’ but my theory is whoever gets to see my slippers must be a close friend so they probably wouldn’t bat an eyelid at what they look like! As I said in my ‘Lockdown’ post, there were definitely benefits of being in Lockdown and not having to buy so many shoes was a definite benefit. Likewise working from home for the majority of my working week also has this advantage!

As I said in the introduction this post was really written just to highlight little challenges but it would be absolutely brilliant if it could offer help to other people. Therefore, if you have problems doing up shoes maybe you could try lacers or toggles! Please get in touch if you would like more information.

At last, my A – Z blog is back! I am aware that my last post was months ago, May 2021 to be exact but I do have a good excuse! I spent most of 2021 writing and filming puppet scripts which I am hoping to be used by primary schools (year 3 upwards) and other settings such as Cubs and Sunday schools etc.. I will write more about this when I get to the letter ‘P’ (the lengths I go to, to make sure my blog covers every letter of the alphabet!) Please can I encourage you, my readers, to tell people about this free resource which is on my webpage Awareness through Puppetry. A considerable amount of effort has gone into this project and at the moment I am relying on ‘word of mouth,’ in order to get this free resource used as widely as possible.

As you will remember this blog is mainly based on personal experience but some posts will be more theoretical in nature. This particular post is very theoretical with the only element of personal experience which I can bring is that I studied the Medical Model of Disability when doing my Social Sciences degree.

The Medical Model was evident in the 1940’s and it is a very medicalised approach of disability (I suppose it is what it says on the tin.!) Advocates of the Medical Model believed that disabled bodies need to be fixed and all efforts should therefore be made in order to cure them. A TV programme which was aired in January 2021 ‘Silenced: The Hidden Story of Disabled Britain’ (still available on the BBC iplayer) was a very good documentary explaining the Medical Model. On the programme one woman, born in 1939, told the story of doctors wanting her disabled body to be perfect, believing that their goal was to make her body ‘able bodied’. For this woman it involved doctors breaking her legs in order to stop her knees from curling up. Not only did they do this once but whenever the doctors saw signs of her legs curling up again, they would break her legs again.

The other shocking bit of the documentary, for me, was the realisation that this was also happening in my life time. The presenter who is the same age as me was born with her right arm ending slightly below her elbow and she recalled being forced to wear a prosthetic arm even though she didn’t like wearing it and found it very uncomfortable. Aged 7, when she told doctors that she did not want to wear it they said ‘well, the other children won’t like it, if you don’t wear it then you won’t have any friends.’ It was fair to say that the lives of disabled people were governed by medical people – doctors making all the decisions. Disabled people were seen as the receivers of services which were primarily aimed at cure, or management.

Fortunately, disabled people began to fight this and during the 1980’s the Social Model became more accepted stating the opposite to the Medical Model,. Disabled people do not need to conform to society. Also, disability was no longer seen as a problem which rested only with the disabled person rather, society needs to work together to solve these problems. A good example of this is a building which has steps and no ramp. The Medical Model would just ‘shrug their shoulders’ and not look at doing anything to alleviate the situation. Whereas the Social Model would be of the opposite viewpoint. What can society do to help the person access the building? There are many more examples of how the Social Model has different approaches but you will have to wait until I get to the letter ‘S’ in order to learn more!

For ease of reference the link to my puppet videos is here. Please do share this as widely as possible. I now have 48 people following this blog (excluding those who pick it up on Facebook) so if every reader could share the above link with one other person then I would be immensely grateful.

When asked how my disability affects me most, speech and walking are the things which come to mind and the latter will be the subject of this post. For those readers with a good memory, you will recall from my post entitled Cerebral Palsy (CP), that although CP is a disability which affects people differently the one common effect for everyone are problems with movement. I can think of two people, I know, who are at opposite ends of the spectrum. One person has a slight limp whereas the other person uses a wheel chair all of the time. I see myself as being in the middle of this wide spectrum.  Before I delve into my own experiences of mobility, I want to do a follow up to my last post which was titled ‘Language’ as my friend who uses a wheelchair drew my attention to a phrase which she really does not like. This is the phrase ‘Wheelchair bound’ as she said, she is not tied to a wheelchair with a rope! A Wheelchair User is therefore the correct term to use.

As with so many things in my life I am hugely grateful to my parents who paved the way for my mobility to be as good as it is. A few months before my 2^nd birthday they allowed doctors to operate on my hips, meaning my legs were in plaster, with a broomstick, between them for 4 months. Then the following year, I had a time (2 weeks) when my feet were in plater.  These procedures, as well as having physio until I was aged 11, meant that I can now enjoy being able to walk unaided. 

Despite all of the above, walking is still a struggle for me and it is something which I find varies day to day, depending on how tired I am. Although I do occasionally feel like going for a walk (especially when we were in lockdown) the majority of the time I see walking as something which I need to do in order to get from A to B. There are things which really to help me and one of these things is pushing something as I walk. I have already shared that when I go shopping even if I only want one or two items, I will always get a trolley. Another example was when my niece and nephew were young, I loved being able to push them in their buggies, as walking for leisure suddenly became so much easier. I remember asking my brother and Sister-In-Law if they could have another baby so that I could still have a push chair to push but for some reason they didn’t think that this was a good enough reason for having a third child. I do get still get opportunities to push people though and this is when I go on my holidays with Disabled Christian Fellowship. If there is a guest who does not have an automatic wheel chair then they best make sure they have got their seat belt on as I soon become known as their ‘pusher.’ It is hard to think of a better example of team work – I help them by pushing their chair and they help me by letting me push them.

I think I realise just how much of an effort walking is when I feel like I am ‘treating myself’ if I ever use a mobility scooter. As I can walk and do not want to be lazy, then I feel like I need to have a very good excuse for me to hire a scooter. The two main occasions when I will ‘treat’ myself is when I go to the event, Spring Harvest, with my church and when I go to visit my friend. When I do use a scooter I feel like I get an insight into what it would be like if I did not have to put so much effort into my walking as I can enjoy my surroundings without constantly having to watch where I am walking and I can also talk on the go! I do not find walking and talking easy to do and the person who I am trying to talk to definitely doesn’t find this scenario easy either, as they can’t understand a word which I am saying!

Me using a mobility scooter is not good news for everyone, and it should come with a health warning for those around me! I have been known to get carried away when it comes to speed and my scooter once collided with a friend’s heel. We were coming up to a set of doors which my friend needed to open in order for us to go through only I forgot to slow down when we were coming up to the door.  Luckily, I did not cause any injury but my poor friend did get a bit of a shock. The funniest story is a story involving glass lifts! My friend and I were enjoying a shopping trip together when we decided to go into a lift together. The sensible thing would have been for us to go in separate lifts but this did not occur to us until we needed to get out. As we were snuggly sitting, side by side, in our scooters there very little space for us to manoeuvre! Luckily, a fellow passenger came to our aid and the glass stayed intact but there was a time when I had visions of us just spending all day going up and down!

I am unsure whether in the future I may well need to explore using a walking aid, especially as I seem to be having a few more falls lately but I am sure that my determination will mean that this decision will still be a couple of years down the line.

At the end of my last post, which was about Love, I mentioned the TV programme Undateables and how unhelpful such negative language can be. I think the worse was the title of the TV series which aired at the end of last year,’CripTales’ (a programme which I would not recommend that you watch!) It is such a shame that the media seems to believe that they need to use controversial language to get people to watch these programmes. That said however, the BBC did get it right with the series named ‘Employable Me’ which showed people with physical disabilities getting meaningful employment. When I was looking for a job, quite a few years ago now, I remember receiving a magazine for disabled people called ‘Ready, Willing and Able’ the fact that I remember the title shows how positive I found it.  

For me, the worse word which people can use to refer to me is handicapped. When I discovered the history of this word, referring to disabled people needing to go ‘Cap in Hand’ in order to get money, as they were not able to work, my dislike of this word grew even more. If I hear the word handicapped then the person who used that word will definitely be hearing my views on it! I remember a friend saying to me that I best not go to America as this is the word for disability, which they use the most. I found this very surprising as America is often seen as being more advanced than England. A phrase which I also hate is ‘The Disabled’ which to me suggests the all disabled people are grouped together like a herd of sheep. Every person who has a disability is unique. ‘Disabled People’ or ‘People With Disabilities’ is therefore the preferred wording to use. When I was thinking of some of the ideas which I was hoping to share in this post I started thinking about the term ‘Disabled Community’ and I think this is acceptable as it is a mush softer phrase than ‘The Disabled’ and from my experiences of going on holiday with other disabled people, it does feel like a community as we have so much in common with each other.  

My friend and I recently had a conversation over the word Carer and the now more widely used term PA (Personal Assistant.) The fact that we both have a speech impediment means that we find the word Carer easier to say and it doesn’t get confused with the business world, but the word carer is negative in itself. For me the word implies that you need a huge amount of care which although some disabled people do need, others like my friend and I do not need this level of care, we just need a bit more support. I therefore think ‘Enabler’ would be a more appropriate word to use.

Language is very much a matter of personal choice, the very word Disabled or Disability can be questioned by some people as it focuses on the negatives. Even how you write the word can help by using a capital ‘A’ in the word – DisAbled. I do suspect that in years to come, language will become more and more positive. I have certainly already found this in my life time, when I was a toddler I used to go to what was then called The Spastic Centre and nobody seemed to bat an eyelid at the word Spastic. Whereas when I recently told someone that I went to the Spastic Centre they shuddered at the sound of that word. As most of you will know Scope used to be called the Spastics Society until it was renamed in 1994.

When I was reading about Reasonable Adjustments, for my work, I got the feeling that this term, Reasonable Adjustments, may also be phased out in time. I found that one company referred to them as Workplace Adjustments which definitely sounds more positive showing that it is not just about doing the bare minimum to support disabled people.

This post has been more informative so very little room which to add humour to it but I will end with a slightly humorous story. When I was crossing the road once, I saw a sign which said ‘Be Careful How You Cross – don’t be a Statistic.’ When I became annoyed and upset my parents asked me what had annoyed me so much and I realised that I had totally misread the sign and instead of reading the word ‘Statistic’ and read the word ‘Spastic’, I obviously needed reading glasses!

The one thing which I have never had is a boyfriend and I think this started to bother me when I was at secondary school. I can vividly remember the Valentine’s Day when I got a card, which I was very excited about. I received the card soon after I arrived at school, so I knew it was from someone at school and it was all I could think about all day. My bubble of excitement abruptly burst when near the end of the day, my best friend told me that the card was from her and it was therefore all a joke. As she was my best friend, I knew she had every good intention thinking it would give us a laugh but what she didn’t know was just how disappointed I was going to be when I realised it wasn’t a True Valentines card.

My teenage years and into my mid-twenties were probably the years where I craved a boyfriend the most. To use the phrase of the song, Love is in the Air, Love was very much in the air around me with quite a few of my friends finding love. There were occasions where I would arrange to go out with my friend only to find that she had also invited her boyfriend to come out with us – another evening of playing ‘Piggie in the Middle.’

 I remember watching a documentary about a disabled lady who said she met her future husband while they we both on a weekend residential course, explaining that it had taken a weekend for him to be able to see pass her disability. She was implying that, Love at First Sight just does not work when you have a visible disability and this was something I totally resonated with. The thought of me walking into a pub and being chatted up was, and still is, somewhat of an alien concept.

As I reached my late twenties/early thirties  a couple of friends were asking me whether I’d ever considered online dating. This was something I hadn’t tried but just in case Mr Right was waiting for me online I decided to give it a go. I remember showing my friend the profile which I had written and after she read it she said ‘No wonder nobody has messaged you, what you have written does not reflect you at all – it is so  dull.’ When I thought about her comment I realised that is was dull because I had completely hidden my disability. I had purposefully decided that I wouldn’t tell prospective partners that I was disabled until they began showing an interest in me. Realising how dull my profile was I tried another online dating site and this time I wrote without trying to hide my disability which portrayed the real me. I still never got any responses though but I wasn’t 100% committed to the process as it was at a time when I was beginning to accept being single.

The reason why I was more accepting of my singleness was because it was at the point when I was entirely settled in my flat and I was really enjoying living on my own. I always remember someone saying to me that she had never lived on her own as the lived with her parents right up until the time she got married. Although when I was in my early twenties, I would have probably given anything to have a boyfriend looking back I am glad that I never did as I would have missed out on this lovely time in my life of growing in independence and being 100% happy with my own company.

If the right man came into my life tomorrow, then yes, I would want to get to know him and hopefully form a relationship. Having a man in my life would definitely make me feel more secure about the future as I am very aware that I still rely heavily on Mum and Dad. I would also love it for Mum and Dad to see me marry, it would probably settle any worries which they have about how I will cope in the future. I am however very thankful that I am still very happy living on my own and I have my big brother and his family who I’m sure will always be there for me, as well as my church family and other friends.     

The one thing which I would never do is take part in the TV programme, the Undateables, as I think this programme as two main flaws. The first flaw is that the programme seems to assume disabled people should only get together with other disabled people. This is something which I totally disagree with and secondly, like most people I object to the name of the programme, using such negative language. This serves as an introduction to my next post, when I will be looking at language and the words which are unhelpful when talking about disability.

Welcome to my long-awaited post! I haven’t been sat around idly since my last post in November, and some of the things which I have been doing tie in nicely with the topic of this post.

When setting up Be Aware Be Clear one of the groups of people which I really wanted to educate were kids. I have often experienced occasions where young children will stare at me in shops I even sometimes try and slow down on purpose in order to hear the parents reply to their question ‘Why does she walk like that.’. Unless I am in a very low mood then their staring does not upset as I understand why children stare. Unless they have a family member or a close friend who has a disability then how will they understand? I often joke that parents should give me money for ‘helping out’ as it is often the case that they are shouting out for sweets to be bought for them, I walk by, the shouting stops and they just stare at me instead.

When I do get an opportunity to go into Primary Schools, I tend to speak to years 5 and 6, although at least two schools have asked me spend half a day with them, beginning in Reception class and then visiting every class up to year 6. After I finish my talk (which is as interactive as possible) I then invite the children to ask me questions. For me, this is often my favourite part as I realise how much the children have engaged. It also makes me realise how much I have changed their perceptions, when I begin, I often get quite a lot of children laughing but by the end of my talk they are so much more understanding. The questions vary a lot depending on what year group I am speaking to. In Reception classes, for example, I have been asked ‘What is your favourite colour?’ and then when I am speaking to older years, I get questions such as ‘Is there a cure for Cerebral Palsy?’ or ‘Do your friends have Cerebral Palsy?.’ (The answers will follow when we get to letter ‘Q’ which will be titled ‘Questions I get asked after giving talks.’) 

In addition to the questions section the other thing which I have found very encouraging is that some teachers then set class work for the children to do as a follow up. Some schools have kindly sent me copies of this work to me. One child wrote the following in their exercise book. 

‘On Tuesday Heidi came to talk to us about disabilities, I learnt that …. Heidi is not very different from me and you. I didn’t know before that people with Cerebral Palsy enjoy things that we enjoy. I also didn’t know that people like Heidi went swimming.’

The Primary School which I went myself used to go to all those years ago! learnt about my work and invited me in to lead an assembly for years 5 and 6 which was quite special. However, the thing which was extra special was that they asked me to do a Zoom session with their year 4 class in 2020. The reason being was that there was a girl in year 4 who has Cerebral Palsy and was having problems feeling included, the Deputy Head therefore came to me for help! This was an absolute privilege as I knew pretty much exactly what the girl was experiencing so to be able to try and help her was lovely.

While most of the schools which I visit are Primary Schools, I have also been invited in to Secondary schools with one Secondary school having now invited me in every year since 2007 with only the pandemic stopping them from inviting me in in 2020!  When I was working full time, I used to take holiday in order to fulfil this commitment. Being invited back every year is a great privilege and every year approx. 200 sixth formers attend – luckily, I do not get ‘stage fright’. As it is mainly years 12 / years 13 who I speak to in Secondary Schools I give a much more detailed presentation which is obviously very different to the version I use in Primary Schools. One of the subjects which I most definitely include is my experience at University as this will probably be the next step which they are going on to so hopefully I inspire them – If I can get a degree then so can they! As with many of the Primary School talks, I’ve received feedback from the Secondary School pupils with one quote being:

I was unaware of what challenges someone with Cerebral Palsy faces on a daily basis, and Heidi has given me a greater understanding of this

Secondary School pupils also have plenty of questions which are much more thought provoking such as, ‘What is the one thing you can’t do which you wish you could do.’ Again, answers will follow in a later post….

I would like to give many more talks than I do and obviously I can’t visit any schools at the moment due to Covid-19. I have therefore been busy recording my school talks and both of them are now on YouTube. By putting them onto YouTube, I am hoping that they will more accessible for schools to use and with all the home schooling that they will offer some fresh online content. After putting them onto YouTube I have been contacting schools which I have visited in the past and one Secondary school has already agreed to forward the YouTube link to students in order to form part of one of their online Enrichment (PSHE Lessons.)

I am very keen to get these talks publicised to schools, so if you know of any schools who you think would be interested in using my material then please direct them to the ‘Recording Page’ on my website www.beawarebeclear.org.

Although these talks are mainly designed for schools to use anyone is welcome to view them and the Secondary School talk is the same as my standard talk for adults, so if you get bored during Lockdown you know which website to head to!

Before I move on to writing about my next subject, I want to pick up where I left off last time. Writing this blog is aimed at giving readers an in sight into my life with disability and to raise awareness. However, the last post which I wrote about jumping, also helped me to gain a better awareness Cerebral Palsy. (CP) A friend who also has CP and volunteers helping people with disabilities said she has also come across this a few times. She has found that people with CP are prone to jumping due to the tension in their muscles, an aspect of involuntary movement. The more I think about this the more it makes sense as some days my muscles definitely feel more tensed than other days even down to how comfortable I feel sitting at my desk! I have also sometimes experienced problems with controlling my movements.

Next subject, ‘Keys to my Own Flat’!

A friend once asked me a very innocent question which sparked a major change in my life. His question was ‘What is your worse fear?’ to which I replied Mum and Dad dying, which incidentally still is my worst fear. However, at the time, I was still living at home with Mum and Dad and I did not do anything for myself, Mum and Dad did all the cooking, cleaning etc. I suddenly realised how foolish it would be to sweep this fear under the carpet and just wait for me to become a burden on other family members and my friends. Around this time, I spotted a new block of flats being built about 1 mile away from my parents, I took a VERY deep breath and talked to Mum & Dad about the possibility of buying one. What then followed was months of extreme stress. Due to it being a new build, we had to put our name down in February but we did not get the keys until the June. This stress really came out in my body and I was literally in bed for 4 weeks barely being able to move a muscle. I could just about muster enough energy to get up for meals and even then, sometimes, Mum had to feed me. I was referred to a neurologist and had an MRI scan, which fortunately came back negative. Due to my very strong work ethic, even now, I am not proud to say I was off work for two months as a consequence.

June came around, by which time I was back working full time and I can picture the office I was working in when I said to a colleague, I was going to pick up the keys that evening. I was still very anxious at the thought and I could imagine that my feelings resembled someone standing at the altar and questioning whether I wanted to get married, after all! After getting the keys I took very small steps over a period of a month to overcome challenges. The first challenge was sleeping on my own, in the end this was something which I conquered without really thinking about it. It was on a Friday night and I wanted to show my Sister-in-Law my flat and we were just about to leave when I announced I was staying. My parents looked at me as if I was mad, all I had was a make shift sofa, no clothes or anything apart from a fully charged mobile phone (something my brother made sure I had before leaving me.!) Looking back, I think that was the one of the most important steps I took as I had not given myself time to worry about my first night being on my own. Friday nights then became my ‘flat’ night gradually getting used to being on my own. I purposefully chose a Friday meaning that I did not have to get up for work and I still had Saturday night and Sunday night to recover! After just over a month of ‘building myself up’ I took the final BIG step and every night became flat night! This was probably the biggest steps of all as I knew my Dad and brother would not have been very impressed if I changed my mind at that point, after they had moved all my furniture etc.

As the flat was brand new, we decided to ask if my kitchen table could be lowered, the kitchen table was meant to be a breakfast bar style, with stools. Due to problems with balance me and stools do not go together so the table was lowered so that I could have chairs instead. My flat really does lend itself to my needs, firstly the kitchen and lounge is open plan meaning I can watch TV easily while eating dinner, rather than carrying it in to another room. (Watching TV while eating would be a tip I’d give to anyone living on their own as it makes it more of a relaxing time.) Being an open plan flat also means that I can have a cup of coffee on my on my coffee table – using the technique of carrying the kettle to the cup so that I do not spill it. When I do this, I don’t look safe as it is, without having to carry the kettle from room to room! The position of my flat is also ideal as I live near the town so I can walk into town easily. I never thought I would cope but I love it and if I can say that after enduring one lock down and now going through a second lock down, I think I will love it for ever! I have achieved what I set out to do back in 2005, climatizing myself to independent living while Mum and Dad are still here and able to support me.

Like ever other achievement, I wouldn’t have been able to do it without immense support from Mum & Dad who are a huge help whether it is shopping, cleaning, stocking my freezer up with home made dinners or until very recently, doing my laundry. I do my best not to rely too heavily on the home made dinners otherwise I would be defeating the object of living on my own so I try to ‘cook’ 3 to 4 nights a week and then for the other evenings I either go to Mum and Dads or I raid my freezer!
I view my flat a bit like a mobile phone charger – it is the place where I can totally relax and charge myself up for whatever challenges I face in the outside world. As I’ve mentioned before everything I do takes me more effort and I think the fact that I’ve coped so well with lock down, is a testament of this, although I still do get tired lock down is definitely a good energy saver!

So, when my friend asked me that innocent question, I probably cursed him when I was so ill with the stress but I am now so thankful that it led me to the place where I am today.

By jumping, I do not mean doing high jumps or jumping out of planes (now that would be interesting!) but jumping at sudden sounds or even sudden movements. Whilst I do not understand how it is linked, I ‘m sure it is linked to my Cerebral Palsy as my friend who also has CP, finds the same. When we have been on holiday together, we have been known to compare notes on jumping. Sometimes a loud noise will make her jump but not me or vice a versa.

One of the things which makes me jump the most is my phone! I know I drive my Mum mad when my phone is on silent and she is waiting for me to text her back. I can remember on two occasions where I have been enjoying a cup of tea before going out and the ‘ping’ noise has made me jump so much that I have spilt my tea all down myself and have needed to get a change of clothes. I remember at the beginning of lock down when I began working from home, I seemed to be very jumpy so I wanted to put my phone on silent but I was worried that doing so would mean that if my manager called me then I would possibly miss his call. I solved this by putting my phone on vibrate but making sure it was next to me – a ‘vibrate’ doesn’t make me jump as much but I still hear it. The other good thing is more often than not my manager will nearly always agree a time to call so I know not to make a cup of tea near that time.

I do not want to say it impacts me hugely because it doesn’t especially as it seems to vary quite a bit, one day a certain noise can make me jump like a jack ‘n’ the box and then on a different day, the same noise will not make me jump as much. However, I could not go as far as to say that it doesn’t bother me at all, because it does! I find that quite often I will have it at the back of my mind – running my dishwasher is a good example. When the cycle is nearing the end, the machine will go quiet for about 20 mins before starting for a final time. I have been known to spill my drink during this time as I jumped so much when it restarted. I will therefore avoid making myself a drink during this time. Another example is, now I use my laptop so much for video calls, if I do not adjust my speaker after a call then when an email comes in that sound can also make me jump. (I have been known to forget to adjust the volume before making a call and I accused my friend of not having her microphone switched on!)

As well as sudden noises, sudden movements can occasionally make me jump – but not as much as noises do. One example would be in corridors. A person walking round the corner has made me jump in the past and they felt like they had to apologise! I always reassure them that it is not their fault and that it is ‘Me’. The one good thing about this annoying aspect of my disability is that it can therefore start up a conversation. It can also provide humour, one time during a church service there was a sudden noise from the sound desk and just watching me jump made my friend laugh.
Jumping is definitely not the most frustrating aspect of my disability (far from it) but it is a factor which can be very annoying.

Apologies for the delay in writing this post, I aim to write one or two posts a month but sometimes this does not work out! I’m either feeling quite tired or things keep cropping up. Anyway, welcome to a long-awaited post looking at Journeys. There are all sorts of journeys which we go on and for this post I am going to look at journeys on public transport, including taxis.

I have lots of experience of taxis, especially as this is my form of transport when I go to work (before home working became more of a norm!)  I am therefore sure that most of my ‘informal’ disability awareness work has been with taxi drivers! I’ve had countless of experiences when drivers just assume that due to my physical disability, I also have a learning disability. For example, a friend was waiting with me to see me off once and the driver said to my friend ‘Does she know where she is going’, I often reply ‘well, seeing I’ve lived there all my life, I think I have got a pretty good idea!’ For me, one of the worst parts about being disabled is when people patronize me and rather than sitting back letting them think that I do have a learning disability I will make it my mission to make them realise otherwise. For example, I have been known to get papers out of my bag and start reading them just to make the point that I can read. Or if the radio is on then I will try to make an intelligent comment about the news bulletin.  If is therefore a huge relief when the driver has got to know me and I can just sit back and let them take me wherever I need to go – even having a sensible conversation en route.

I really enjoy being able to use buses to meet friends and/or to go on shopping trips further afield than my town centre. I just love to be totally independent sometimes. Getting my bus pass seemed to give me even more enjoyment in using buses as I no longer needed to worry about getting the driver to understand exactly where I was going. Out of politeness I do always say where I am going but I know as they do not need to work out the fare, then this information is not crucial. Unless of course I get on the wrong bus and it doesn’t go where I think it goes – but this has not happened yet.

A couple of times a year I will also use trains, using a train feels more challenging than a bus with going into London being the most challenging. At the most I only go into London once or twice a year and this is mostly for a work meeting. As I now work as a Disability Champion, I feel it is easier for me to say ‘no’ to going to places where a trip on the underground is needed. I don’t mind too much going to Euston or somewhere near Euston – although even then I am still very happy to get home! The only other time I use trains is if I want to go away for a few nights independent of Mum and Dad – obviously avoiding London at all costs!

When using trains, I usually do so without getting assistance although on one of my train trips I had very painful feet so I felt like I really did need help. The experience was both good and bad. It wasn’t until the morning I decided that I really did need assistance (Mum and Dad were away themselves so I couldn’t really call on them and I did not want to let my friend down by not going at all.) I had heard that you need to book assistance at least 24 hours before so I did not hold out much hope seeing that it was only 2 hours in advance.  (I’ve heard other disabled people rightly moan that just because you need assistance then you cannot make a spontaneous journey.) To my surprise however, they said ‘yes, someone will be waiting for you at the station’ true to their word they were waiting, took my luggage and saw me onto the train. It then went a little bit down hill as although I had told them where I needed to change trains when I came to change, there was no one there to help. I wasn’t quite sure what to do as I did not want to get off myself, if someone was coming to help but neither did, I want to end up going somewhere completely different. Fortunately, I did manage to get off myself, but because I’d left it to the last minute, I ended up falling onto the platform – luckily only sustaining a few small bruises!  However, that experience made me realise how difficult it is for people who use wheel chairs and do not have the ability to get off. When I made my return journey luckily my feet were better so I did not book assistance and I did it solo! There were always other people around who would help me with my case, if needs be.  My conclusion therefore is like what I say about technology, railway assistance is brilliant when it works but useless when it doesn’t!