Welcome to a very topical post! For me, lock down has definitely not been all negative, in fact, it has been a time of achievements. The first and the main achievement has been the fact that I have been able to stay living on my own, something which I was very doubtful about at the beginning. I knew going back to live with Mum and Dad was always an option and I really thought that this would be the final outcome but it hasn’t been. Despite having lived on my own for 15 years I have never felt that I was completely on my own. Mum and Dad usually pop up to my flat, several times a week to do little jobs for me but this has not been a possibility during the pandemic. However, true to form, my parents have still been a huge source of support. I have added my shopping to their online shopping orders and they have come down to my car park whenever I have needed anything – it is easier to do this little by little as carrying a big load up my stairs is not easy.

Due to knowing that Mum and Dad can’t come up to do odd jobs, I have become even more independent, doing things which I never thought I could do. One such example was arranging to have work men in to fix my dishwasher. Usually I would ask my Dad to arrange this and to let them in etc. but as I wanted it fixed before August, I decided to arrange them to come myself. My main worries were that they would not find my flat (and wouldn’t understand me if I had to give directions.) Or that they wouldn’t take me seriously and just halfheartedly look at my dishwasher and leave, saying there was nothing wrong. Like most of my worries, these never materialised and all went smoothly. I have also been able to do the vast majority of my own laundry something which I always relied on Mum and Dad for. Even little achievements have made me feel proud, being able to work from home – I have probably gone from spending 60% of my time on my own to spending 98% of it on my own.

Throughout lock down I have taken part in online meetings with the Christian charity, Through The Roof (TTR) and I therefore know that I am not the only person who has recognised some of the positives of lock down. Very early on in lock down I was struck by a comment that someone who is in a wheel chair made. They were explaining how pleased they were about being able to attend their preferred House Group, something which they couldn’t do before due to the home which they met in having stairs. I myself have found that I have been able to go to my House Group much more than I did prior to lock down – rather than having to go out of an evening I can just sit of my sofa and switch on my laptop! Although I have noted that I probably do have more energy there are still some days when just doing so much online activity wears me out and it has taken me time to realise that pacing myself is still something I should think about in lock down. The new option of going to my church services in my PJs has therefore been an option which I have taken up on more than one occasion! Other themes which have come out of the meetings which I have had with TTR is that lock down has helped able bodied people realise some of the issues which disabled people can face. This was especially true at the very beginning where nobody was allowed out for more than 1 hour a day, being confined to a house is sadly the reality for some disabled people all of the time.

In the sphere of work there have also been advantages due to the advent of online meetings. I have definitely noticed two clear advantages, firstly taking minutes of meetings and secondly participating in meetings. I was taking minutes last week and rather than trying to write notes by hand I was able to type notes directly onto my laptop which will make producing the minutes so much easier. (Laptops are scarce in the NHS if you are reading this and wonder why I don’t always have a laptop in meetings!) I have also enjoyed using the chat box function in video calls in order to ask questions. Although I am not a stranger to speaking and I give disability awareness talks I can sometimes find asking questions in meetings a little daunting so being able to type them is brilliant.

I think I will find coming out of lock down more of a challenge than being in total lock down. As I mentioned in a previous post wearing a face covering will be challenging. At the moment I am persevering by trying different types but I found a recent shopping trip very disheartening as the face mask seemed to be yet another barrier. Also, although in some areas of my life I have become more independent in other areas I have become more dependent. I always used to enjoy doing my own grocery shopping but as this often involved getting a taxi then, while Covid 19 is still in circulation I wouldn’t feel totally safe in a taxi.

While there may be new restrictions for disabled people, until a vaccine is developed I am hopeful that some of the new ways of doing things – especially online meetings – will continue therefore making the world more accessible.

Having written a post about Gaining Employment, this post is all about my experiences in work. Despite communication being the main barrier, I face when trying to get a job, this does not seem to be a barrier when I’ve got my foot in the door!

As people get to know me, they find that they tune into my speech, so I would therefore never apply for a public facing job! All of my jobs have involved me working with more or less the same groups of people meaning that in time they tune into my speech. When my communication does pose challenges then there are certain strategies I employ. One example being when I need some information urgently, it is very frustrating when people say ‘Just pick up the phone and ask them.’ (People find it is far easier to understand me when we are face to face.) In these situations, I will therefore email the person with the question but then as soon as I press the ‘send’ button I will ‘phone them and start the conversation, ‘further to my email…’

My second strategy which I employ is when I go to meet people for the first time, I will often write down the name of the person I am wanting to see just in case I have to ask for them in a reception area. I would only use the piece of paper as a back-up as I always prefer trying to make people understand my speech but if I do get into problems it is something that I can quickly whip it out!

Walking is another aspect of my disability that I need to consider, as walking can be quite tiring. Not only can it be tiring it can be time consuming which is frustrating especially when I am particularly busy and need as much time at my desk as possible. My strategy for this aspect is to try and arrange to meet people either directly before the time I want to go out to get my lunch or directly afterwards. ‘Killing two birds with one stone is a phrase which comes to mind!

One of the biggest challenges I’ve found with working in the NHS is the rapid turnover of staff. In my previous job I had a total of 15 managers over the 15 years. (It is pure coincidence that it sounds like I had a new manager every year – some managers stayed more than a year and some less.) As I think I mentioned in the post which I wrote on Health whenever I have a new manger I often feel like I am the one who has the new job. Feeling that I have to prove myself once again and break down that barrier of assumptions and reality. As you would expect, some managers have been better than others. I am sure one manager just wanted to get rid of me, trying to do this by moving me and my job to a totally different department. My next manager quickly moved me back straight away!

I think it was back in 2016 that I really begun to think about the need to reduce my hours as I was finding full time work too tiring. I made two flexible working applications one in 2016 one in early 2018 but they were both turned down. 2018 turned out to be a quite a bad year for me health wise as it was the year when the problems with my jaw really impacted my life due to needing to change medication to help with pain relief. The hospital where I work has a very strict sickness policy and although I have been known to work, on several occasions, despite not being well enough, I found myself in a situation where my attendance was under review – it was an absolutely horrible situation. I remember before going into the sickness meeting, I went through all the times I had been off sick and I knew I’d needed every single one of those ‘sick days’ and in some cases, I probably returned to work too quickly!

During one of the review meetings the Occupational Health doctor recommended redeployment which carried risks. As soon as I signed on the dotted line I was acknowledging that if no alternative job was found for me I would probably face dismissal. I also knew my body had had enough of full-time work so I really did need to sign on that dotted line! This was obviously a very stressful time, not only for me but also for my family. Fortunately, my manager at that time was very supportive and instead of giving me 4 weeks to work with the HR team, to find an alternative job I was given 12 weeks. My manager was also very good in the July of that year as she could see how much I was struggling yet I did not want to give up so they allowed me to reduce my working week to four days. I always remember my manager commenting about the difference in me that she had noted. When I was only doing four days and having Wednesdays off, by the Friday I no longer looked totally exhausted but also that she was no longer struggling, by the end of the week, to understand my speech. (My speech is always worse when I am tired.)

November 2018 was when I took on my new job as Disability Champion and I am now very much seeing myself as trying to use my often, bad experiences and turning them into good for people who may follow in my footsteps. Just before Covid-19 the sickness policy was going to be amended so that the sickness triggers are not as stringent for people with Disabilities/Long Term Health Conditions. (Helping people like myself who take more time fully get over an illness.) I am also working with a colleague to get the Redeployment policy reviewed and that will contain a totally different process which managers can follow for people with a Disability/Long Term Health Condition. (At the moment the Redeployment Policy is very much written with people who are being disciplined in mind rather than people with a disability who no longer feel able to do the job.) My next major bit of work, is a Disability Passport which I have heard about not only through other Hospital Trusts but also companies. The Disability Passport is a document which formally details any Reasonable Adjustments which you need in order to do your job plus it details any other disability specific information your manager needs to be aware of. The purpose of the document is that it stays with you throughout your employment and will therefore provide information for any new managers. I am sure that having a Disability Passport would have really helped me, in the past and I can see it will be useful in the future to me and other people, so I am looking forward to developing this.

I am very lucky in as much that I can go on holidays relatively easily – I know this is not the case for some disabled people. It’s true that I do have to look at access a little bit more than other people, making sure the place where I am staying doesn’t have too many steps, but there have not been many places where I’ve been unable to go to for this reason. I am also lucky that I’m able to go on many different types of holiday.

Some people are quite surprised when I tell them that I go camping – the longest which I have camped for is a for week but this is more challenging. I tend to only go for weekends now with the thinking that if, in terms of hygiene, I do anything more than brushing my teeth and washing my face with a wet wipe then this will be a real bonus. Taking a shower in the comfort of my own home probably takes me twice as long as the average person without having to negotiate a small portable shower cubicle and knowing that there is more than likely to be a queue of people outside.

Perhaps, my most favourite kind of holiday – and the one which I take most often is a cottage holiday. I have two very good friends and almost every year we will go away on 2 separate holidays – it is a time where we can totally relax. Prior to ‘finding’ the pleasure of a cottage holidays I used to go to hotels, which were lovely but there is always that need to set an alarm if you want to guarantee breakfast. Whereas in a cottage, breakfast is served when you choose to go and get it and you can go in your pyjamas! My perfect holiday is spending a little bit of exploring time the local area but for me, holidays are mainly about relaxing and spending quality time with my friend. My nightmare holiday would be a tour holiday where you need to be up and out by a set time every morning ready for a day filled with walking around and constantly looking at your watch so that the coach does not leave you behind!

My second most favourite holiday is the holiday I go on, most years, with the Disability Christian charity, Through the Roof (TTR.) I began going on these holidays when my friend wanted to go to America – as I said above, touring holidays are not my ‘thing.’ I was therefore toying with the idea of either just staying at home or trying something totally new. Luckily I decided the latter as this was when I discovered the holidays run by TTR. Up until this time, I had seemed to have spent my life ‘running’ away from other people with disabilities wanting to live totally in an ‘able-bodied’ world.

This holiday is based in a school which is usually used for disabled children so even my bedroom scared me! It was fitted with a ceiling hoist (for students who were permanently in wheel chairs,) the bed had cot sides and there were alarm cords by the bed and in the bathroom. It reminded me more of a hospital room than a ‘you’re on holiday’ room. I think my face said a thousand words as Dad quickly said if you want me to come and pick you up early, just shout! It turned out to be the opposite, when Dad picked me up at the end of the week I didn’t want to leave! As I said when I wrote my ‘Friendships’ post I just find it lovely and relaxing to be with people where you all have so much in common – living with a disability. Now every year when I return I feel like I am going to my third home (Mum and Dad’s will always be my second home!!)

The final type of holiday and one which I also very much enjoy is a ‘Holiday at Home!’ When I was working full time, I probably got more excited over having a week at home than someone would get about going on an exotic holiday. I have noticed however that now I work part time, I enjoy going away more. This is probably because I no longer get to the stage of feeling so desperate for a rest that even the thought of packing seems too much. However, that said I am still quite a bit of a ‘Home-Bird’ My love for Holidays at Home is that you can do things as differently or as similar to normal as you like. I think the fact that I am usually very self-disciplined adds to the pleasure of Holidays at Home. I usually only allow myself to have alcohol at weekends whereas when I am on holiday – every day is a weekend! I also really enjoy going out on my own, maybe for a sandwich lunch either in my local town centre or getting a bus and going a little bit further afield. As well as spending time pleasing myself I also love going out for long lunches with family and friends.

I have found parts of this post quite tricky to write as the overall purpose of every post is to create disability awareness but as I said in the introduction I am fortunate that I can go on holidays without too many problems. I could have probably littered the post with comments such as I like to totally relax due to the difficulties I face in daily life, which is true, but I think that would be using the ‘disability card.’ Who doesn’t like holidays as they provide much needed relaxation for so many.

H – Health
Included in the definition of Cerebral Palsy (CP) is the fact that it is not a disease or an illness therefore I have a disability, not an illness. However, having had over 40 years of lived experience I can say that CP does impact my health to some extent.

A good example is that a common cold or cough can really wipe me out as I do not have the reserve of energy which I usually rely on. The day my new manager started is a good example. On his first day, I had a particularly bad cold so I was definitely not firing on all cylinders – in fact, I could barely talk! I can only imagine what his first impressions of me were. It therefore took me even longer to prove myself to him and to knock down that invisible barrier of assumptions and reality which I often talk about.

Although I do not fully understand it, and do not have access to a CP specialist to discuss it with, I know that my breathing is often quite shallow and I have to make an effort if I want to breathe deeply. For those who spend a lot of time with me will know that I do tend to cough quite a bit! When I was a child my physio used to show Mum how to pummel me in order to help me to clear my chest. This aspect of my CP is therefore at the forefront of my mind now, given the threat of Coronavirus. Although I have not been told that I need to shield, I am being particularly careful and am only going out if I really feel like I need exercise. I am very fortunate in as much that I can work from home and my manager understands that I am in the vulnerable group. The other aspect of my CP which I do not fully understand is that I do not breathe through my nose rather I breathe through my mouth! My friend, who also has CP, also finds this to be case so it is not some weird trait that I have. It will therefore be interesting if I need to wear a face mask but I’ll cross that bridge when, and if, I come to it!

I believe that the second main way in which CP impacts my health is very occasional bouts of mild depression. To be perfectly blunt I do not always find life easy and I regularly get setbacks and experience struggles. It may be the person who I try to phone, who hangs up on me, or the frustration I feel when I can’t go at the speed which I would like to or the frequent need to prove myself. I believe that unconsciously I bottle all these negative emotions up and something will happen which will make the top come off. Several years ago, my GP prescribed me a low dose of anti-depressants and I still take one every day. It is a shame that there is still a taboo around taking these as they really do help. I realised how much they helped me when I recently came off them, due to them conflicting with a pain killer which I was taking for my jaw pain. For the six months when I was off them I had a terrible time in fact, lock down seems a breeze compared to then. As someone once said if you’ve got a headache there is no taboo around taking a paracetamol, therefore if you have a tendency to feel low there should not be a taboo around taking medication which helps. They are not a total cure as there are times when I still get low and I feel like everything is a struggle, earlier this year I went through such a phase but nothing like when I stopped the anti-depressants all together.

The third main way in which my disability impacts my general health is through tiredness, I find that everything I do takes me much more effort. Joking aside, I think as I get older I get tired more easily and like most people, I find that periods of stress can trigger tiredness. These were the main reasons why I knew I needed to change my job, to a less stressful job, so that I could work part time.

In conclusion, I would say that I do enjoy good health but, on the times, where I do get unwell it really takes it out of me and it can take me a long time to fully bounce back. I really have found working part-time has been such a help to my health breaking the vicious circle of tiredness and low mood which can so easily creep up on me.

When I deliver my disability awareness presentations, I always say that ‘Getting’ the job is much harder than ‘Doing’ the job. I have had a total of three jobs and firmly believe that I only got these jobs because I was able to prove that I was able to do the job, before the interview stage.

Upon leaving University I begun volunteering in my local Volunteer Centre and was involved in helping to set up a local project, encouraging young people to volunteer. During my time as a volunteer they were advertising for an Admin Support Officer. I was in effect doing this role but rather than being paid I was doing it on a voluntary basis. I therefore decided to apply for the job and I was successful. I am sure I was only successful because by the time of my interview rather than seeing my disability, they saw my skills. Unfortunately, due to the project being reliant on public funding, after two years the funding was withdrawn so my manager had to make me and the other paid staff redundant. Something which she hated doing.

Six months followed of me looking for jobs. I have just found a record which I kept and during the six months – I looked on 30 websites daily (apart from weekends), applied for 36 jobs and had 6 interviews. People say looking for a job is almost a full-time job in itself and this was certainly true for me.

The only successful interview which I had during those six months was my interview at West Hertfordshire NHS Hospitals Trust and this was only for a temporary part time job.  I really wanted a permanent job but I decided to take this job as I was so eager to re-enter the world of work. The job was based in the Governance department and it was a data entry job – inputting details of incidents, which were reported by the hospital wards onto a database. I accepted the job in the March and by the November instead of it being a temporary part time job it became a permanent full-time job. Again, like with the job at the Volunteer Centre by the time of my interview rather than seeing my disability they saw my skills. I did this job for 15 years so it was quite the opposite of being temporary! Plus, it rapidly changed from data input to me training people how to input their own data onto the system.

My third (and current) job is still at WHHT so again the reoccurring phrase in this blog about rather than seeing my disability they saw my skills also helps to explain how I secured this job.

As part of my Be Aware Be Clear work, I have delivered Disability Awareness sessions to companies and one my main messages is to think how they word their job adverts. For example, when they include phrases like ‘Good Communication Required’ they should break this down to specify whether they require ‘Verbal’ or ‘Written’ communication. As a later post will show much of my communication at work is written – through emails. Similarly, I have been put off from applying for jobs with the phrase ‘Driving License Required.’ I do not drive and this could easily be added both of my two jobs at the hospital. The hospital Trust where I work is spread over three sites but yet I have done 17 years of service without having to have a driving licence. As I am based on our main site (Watford) I rarely need to work on the other sites but when I do, I just make arrangements to work on the other site all day

Another main message to employers would be (you guessed it) rather than simply seeing the disability see the skills which the person has!

I still remember the very first ever shopping trip which I made on my own. It was initiated by my physiotherapist (of all people.) My physio was amazing and could obviously see the need to get my independence up. At one of my sessions she suggested that I went into a shop, on my own and buy something. My first purchase was a house plant for Mum & Dad as a ‘thank you’ for all they do for me. If I said I was sweating with nerves, when trying to get my purse out to pay then that would be an understatement! In today’s terms, it probably felt the equivalent to me jumping out of a plane! Another activity which my physiotherapist also recommended was for me to walk around on my own and I vividly remember Mum getting me to walk from Boots to Marks and Spencer’s on my own. Doing this felt like a hike, again I was sweating like mad – people who know Hemel will know that it really is not far at all.   Shopping can obviously be split into two categories – shopping for clothes and shopping for food – in this post I will cover both.

The main question which I need to ask myself when I go shopping for clothes is, will I be able to get the garment off? Due to my disability and my right side being particularly weak I find it very difficult to put both arms up straight above my head – this was especially true when I was younger.  I remember going shopping with Mum and she found me a lovely dress to try on. After being in the changing rooms with me for a considerable amount of time Mum’s only choice was to rip the dress in order to get if off! A very upset Mum had to go and apologise profusely to the shop assistant who luckily, was very understanding and thanked us for not just putting the dress back on the hanger and walking away. Years on Mum has learnt to laugh about this incident but at the time it definitely was no laughing matter. As well as small openings for my arms, I find buttons a continual challenge – they were impossible when I was younger – now they are a struggle which I can usually manage.

Only last year, when I was out shopping, on my own I found a pair of trousers which I really liked. The button was fairly big so I thought, yes, I’ll manage to fasten and un fasten them. Not on the same scale as the dress incident but when I was in the changing room, I had to ask the shop assistant to come and undo the button for me. She probably thought that was strange and when I bought them she probably thought it was stranger still! I was fairly confident that once I had a time to practice fastening and un fastening them then the button hole would get slightly bigger and therefore easier. As I live on my own I did think, when I was practising, I would end up knocking on a neighbours door if I really couldn’t get them off but it never came to that and now, they are fairly easy to undo – I just make sure I go to the toilet before I am desperate! As well as finding shopping for clothes frustrating due to having make purchases dependent on fastening etc. I also find it quite tiring and it can make my back ache, easily. I therefore prefer food shopping

Food shopping for me is far more enjoyable and the main reason for this is because supermarkets have trolleys – if I am pushing something then I find my walking is so much easier.  I always remember going around Dunelm (not food shopping, I know) with a trolley and all I bought was a birthday card – no wonder I got weird looks! The other reason I prefer food shopping is that the achievement is instant – even if I am tired I can just get the basics relatively quickly and know that I’ve achieved something. Who wouldn’t agree that buying a bottle of milk is easier and quicker than buying an item of clothing? Obviously with food shopping there is the challenge of carrying it but I am lucky as I rely on my parents for the heavy shopping plus, I choose to shop in Asda where I know there is a taxi rank outside.

Bringing things right up to date…when writing the sentence re buying a bottle of milk being easier than buying clothing I did have to hesitate. Before the lock down I was in Asda and there was far more clothing than milk – not a bottle in sight! Just prior to writing this post I took on a new shopping experience – online shopping. My parents are now doing online shopping so I have just been on the online site, for the shop which they will be using, and have emailed them my list. When this horrible situation is over, I look forward to going shopping independently again. I know most disabled people would choose to do online shopping all the time but I genuinely like going around a supermarket with a trolley! I am however becoming partial to using the shops ‘click and collect service’ for clothes – if there is something specific I want, because I can sit on my sofa instead of trailing around a big shop where pushing a trolley is not seen as a norm.

When I give talks to primary schools, I share my experiences of being bullied by the other children, when I was at school. This quite often prompts the children to ask whether I had any friends at school and/or how long it took for me to make friends. When giving a talk recently, I explained that I didn’t have a real friend at primary school so it was not until I got to secondary school that a real friendship developed. I think this is because people see my disability before they see me as person. One of the messages which I leave primary school children with is not to be afraid to talk to people who are different to them, it is through talking to people that you get to know them properly. As I went through college and university making friends was easier probably because people were more mature and willing to take time to get to know me. However, even now that I am an adult, I still think it takes me much more time to make friends compared with non-disabled people.

The positive side to not being able to make friends quickly is that when I do, I really appreciate it and I do not take the feeling of total acceptance for granted. For example, when I used to go to Rock choir, I was so surprised at how accepted I was, people were always so friendly towards me, seeing me as a person rather than simply seeing my disability.

Most of my friends fall into two groups. The first group are friends who have known me for a long time and therefore have been patient in getting to know me. The 2nd group are the friends who I have met through the holidays run by the organisation Through the Roof (TTR.) The people on these holidays are either disabled themselves or are giving up their free time to go on holiday with disabled people therefore there is a different and deeper level of understanding. The first year I went on a holiday with TTR I had such a brilliant feeling and when I came back, I summed it up by using an analogy:

When I was there, I was like a fish in an enormous pond – I was in the world where I fitted in, no struggles, no trying to keep up with everyone. Whereas back at home, thanks to my brilliant friends and family I have lots of streams of water but not the big pond!

Without being too formal there are two main qualities which I look for in a friendship. Firstly, and most importantly, a friend who does not keep talking about my disability. I have known people who cannot seem to talk to me for 2-3 mins without keep going back to my disability. For example, I will be talking to someone and they keep commenting how well I do despite my disability or they are constantly questioning how I cope. The second quality being the ability to be empathetic- there is actually a thin line between the first quality and the second quality. By being empathetic I mean having the understanding that life can sometimes be difficult and if I am struggling and I do want to talk about my disability, and vent some frustration, having the patience to listen rather than just hear.

I don’t like to be too hard on myself when I say this but I do believe that being my friend requires
people to invest more effort than they would have to if I was able bodied. As I said at the beginning
people need to invest time in getting to know me as a person rather than simply seeing my disability.
There is also more giving than receiving in our relationships for example driving. As I
cannot drive friends have to drive me (I must admit that this is very handy if we going somewhere
serving alcohol!) My friends also end up doing a lot of carrying for me in terms of food and drink – to
name but a few things. On the flip side I do try to ‘give’ as much as I can. For example, I am very
reliable and punctual, if I say that I will be somewhere at a set time I will be there. I also do my best
at keeping in touch, especially when I know that friends are going through a tough time.

I therefore regard my friends as very special people and most of the people following this blog are
my friends so thank you being my friend!

As I am from a family of non-Christians, apart from being baptised as a baby and a few visits to Sunday school, with my Mum’s friend, my journey of faith did not begin until I was roughly 12. I vividly remember where I was and what I was doing when my journey begun. I was feeling very low and I was walking in my Mum & Dad’s garden, I could even take you to the exact spot in their garden today. I was trying to make sense of my disability – why did I have to be born disabled? I then suddenly realised, God must have made me disabled in order to educate people and create greater awareness of disability. Looking back, this was when the ‘seed’ was planted but I didn’t proactively do anything to let the seed grow until I was about 21 which was when I begun going to church on a regular basis. In the years between acknowledging God and going to church I became involved in a group for teenagers which was connected to a church but this was only to boost my social life! They always joked with me that they never saw me on a Sunday morning. Through being a member of that group, I did the Alpha course, something which I would recommend to anyone wanting to find out more about Christianity.

The major part of my faith journey happened in 2007 when I went to the Christian Summer Camp – New Wine. This was a week long camp and throughout the week I was experiencing things which I’d never experienced before and then on the last night I had a very strong belief that I would be healed. The fact that I wasn’t healed proved to me that God wants to use my disability for good. Within 1 month of arriving home from New Wine, I knew I was ready to have an adult baptism which was a very special day for me, not only could I give me testimony to my church family but also to my earthly family who never come to church.

Over the last 13 years, I have become increasingly involved in Through the Roof – a Christian charity – Transforming Lives Through Jesus with Disabled People. There are three strands underpinning their work
Freedom – Providing wheelchairs to disabled people who live in developing countries
Friendship – encouraging friendship between disabled people by organising accessible holidays and retreats
Faith – Helping churches to become more accessible and more aware of disability.

Being part of Through the Roof has been hugely beneficial for me, and for the last five years I have thoroughly enjoyed the annual activity holiday which they run. It is very special to be with people who not only share your faith but also share the trials which come with disability. One of the great friends who I have met through these holidays is now called my Twinny and we message each other every week with updates and prayer requests.

Faith has therefore been and will continue to be a very important part of my life.

For more information on the work of Through The Roof please go to:
https://www.throughtheroof.org/

One of the things which I am very passionate about is the provision of mainstream education for children with disabilities and it often comes up in conversation with my friend who is a primary school teacher. I was very fortunate, by the age of 5 I was in mainstream education but that fact that I was rested entirely on the fight which my parents had to go through. (As I’ve said in a previous post my determination has come from my parents and one of the many things which their determination achieved was getting me in to mainstream education.) The school in my road refused to take me due to the stairs which they thought I wouldn’t cope with – fortunately another local school saw beyond my disability and welcomed me into their school with open arms.

The BBC ran a story last January (2019) which found that Councils in England have faced an over spend of £324 million in terms of their budget for young adults and children with special needs, with some children being forced to stay at home. One of the initiatives which a school has set up is to have ‘colourful pods’ within their mainstream school. This allows children with autism to spend 80% of their school day in the ‘normal’ classroom, and 20% in an environment which specifically caters for their unique needs – something which I think every school should have.

Although I am fully aware some children have such complex needs and therefore mainstream school would not be a possibility, being in mainstream school was crucial to me being where I am now. I therefore want to use the rest of this post to share my experiences, looking at what really helped me to cope.

At primary school I had a one to one welfare helper who was quite literally by my side throughout primary school. I still remember my first day when she was standing at the door to welcome me in and said ‘Let me get used to holding your hand.’ I was also assigned a ‘dinner lady’ who would be with me during my lunch break. My welfare helper took me out of the normal PE lessons in order to do physiotherapy with me which was great and I know she found it rewarding herself, to see the progress which I was making. The caretaker of the school also helped me by putting up a hand rail in the toilets meaning that I could safely use the toilet. Using the modern-day terminology these Reasonable Adjustments really did help. I found interaction with the other children very difficult, particularly in year 5 on wards, when the children used to bully me and make fun of me. I remember someone asking me whether special school would had therefore been easier, obviously bullying was not nice and I would had preferred not to be bullied but I think it prepared me for the ‘outside world.’ Also now that I work creating Disability Awareness I like to think having me in their class helped them to grow up, knowing people are different but that being different should not be something to be frowned upon.

Due to me having been in mainstream primary school, going to mainstream secondary school was almost a given. My parents and I did look round a mainstream school with a dedicated Special Educational Needs department attached to it. However, when we went to the Open Evening, they segregated me, telling me that I needed someone ‘special’ to show me around. It was at this point that my parents and I knew that this was not the school for me.

My mainstream secondary school also assigned me with a one to one helper and again made Reasonable Adjustments, one being to allow me to opt out of my Design and Technology GCSE. I think a small accident which I had with a hammer gave my teachers a clear indication that I was not going to flourish in a wood work career. (My teacher was helping me to tap a screw into a piece of wood but due to my poor hand-eye co-ordination instead of hitting the screw, I hit the teacher’s finger! Luckily no serious injury was caused.) The school therefore asked my one to one helper to use the time, when I was meant to be doing Design and Technology to work with me thinking of ways I could live independently in the future. During the first ‘lesson’ of the week we would go shopping and buy easy to prepare food (for example, instant mash) then during the second ‘lesson’ we would cook what we had bought.

The other notable Reasonable Adjustments made for me was to do all my work on a typewriter and then for it to be glued it into my exercise books. When it came to exams, I was given extra time (25% if I remember correctly) and these were also done using a laptop.

After secondary school I went onto college and then onto University – subjects which will feature in later posts. (I need to think of something to write about when I get to the letter ‘U’!)

Reference: BBC News Article – http://www.bbc.co.uk/news/education-47058309

Due to other commitments, namely giving a few more talks and getting ready for Christmas, it has been a while since my last post – sorry!

Christmas is of course a lovely time of year but I do find it a very busy time as I put a lot of effort into the weeks leading up to it. I see Christmas as an opportunity to show people how much I appreciate their friendship and support throughout the year, or in years gone by. In most of my cards I therefore write a personal message and/or enclose my annual letter. I probably also buy for more people than the average person does, for example, I buy for my taxi drivers as without their reliability throughout the year, I wouldn’t get to work. Like most people I also have very good friends and a very special family who I naturally like to buy for. The topic of this post, Every Little Helps, has also applied to Christmas this year. Due to the environmental impact, we as a family have decided not to wrap presents which we give to each other. Wrapping is very fiddly for me so I kid you not this has probably saved my 4 hours of work meaning that I can write this blog now rather than it having to wait until the New Year

Aside from the big things which people do to help me there are also the little things which are a great help. At work, for example, only the other week, someone offered me a cup of tea and they couldn’t quite believe how joyously I accepted it. They looked at me somewhat puzzled, saying, it is only a cup of tea, but making myself a cup of tea, at work, takes me a lot of effort. The kitchen where we get the hot water from is a little away from the office so I have to use a travel mug, with a lid, and walk back very carefully not to spill it. I value my independence so much, meaning I wouldn’t want people to make me tea all the time, but when they do then offer it is very welcome. Where I used to work, they were particularly bad at keeping the draining board clear meaning until I cleared it I did not have space to put my cup down, while I operated the water tank. (Most people can hold their cup in one hand as they pull the lever down but I can’t.) As soon as I told them that it was adding effort to my ‘making a cup of tea regime’ they always made sure there was a little gap – an enormous help.

Sticking with cups of tea, other little things really help when I am at home. Firstly the ‘tea bag tidy.’ Due to being too wobbly to be able to carry a cup of tea from my kitchen to my coffee table I put my empty mug on the coffee table and then bring everything to it (ie the water and the milk!) I therefore find a ‘tea bag tidy’ extremely useful as I don’t really want to bring my kitchen bin to the coffee table as well – in order to throw the tea bag away! Secondly bricks on my balcony – yes – you’ve read it correctly. Due to my balcony being quite small, I cannot fit a table on it which is not too low for me to easily pick up a drink from. Mum and Dad therefore came up with a brilliant idea of putting bricks underneath the table so now I do have a table at the right height

Tables, in general, are another thing which greatly help. Only this week, I went to a watch a Christmas performance and there was mulled wine being served. I remember thinking that I would love a mulled wine but I probably won’t bother – the effort of trying to stand and drink it wasn’t worth it. My friend who I was with spotted that there was a table in the corner of the hall – with a chair – absolutely perfect! I found it hard not to have more than one glass! Something as small as a table with a chair really does help! Similarly, as soon as my church realised that I wasn’t having a coffee after the service for the same reason, they made sure a little table, now known as ‘Heidi’s’ table’ is always at the back of church. Again, this makes a huge difference as I can enjoy catching up with people after the service rather than just staying where I was sitting and waiting for a friend to take me home.

I have also found little things myself which really help for example the timer on my camera. Despite having a camera on my mobile phone I often used my old camera as I found this easier hold, until I found the timer button. I have worked out if I set the timer for 5 seconds, I can press the shutter button but the photo will not be taken until 5 seconds afterwards, This gives me time in which to hold the phone up and for me to be steady enough so that the photo isn’t a blur. I take far more photos now!

Another great little thing is ‘Drawing Text’ I got this tip from a friend who like me has poor dexterity in her hands. I was watching her texting some one on her phone and I could not work out how she was doing it so quickly – she was ‘Drawing.’ If you have predictive text on your phone and the right sort of keyboard app, then as long as your finger goes across every letter in the word, the word will come up. It is not 100% accurate but I find if I am concentrating then 95% of the time it works brilliantly! I also extend this to work meetings, rather than trying to hand write notes I use the notepad app on my phone and then download my notes onto my computer. (Obviously, I let the organiser of the meeting know what I am doing so that they don’t think I am texting when I am in a work meeting.)

Ending on a Christmassy note, one of my friends once bought a set of metal straws for Christmas. Although I keep telling her how useful they are there is no way she could realise just how helpful they are. I always carry one around with me helping me to drink coffee from cups with small, fiddly handles. I can now enjoy coffees out, so much more

So yes, I agree with Mr Tesco – Every Little Helps!

Happy Christmas and a Happy New Year to all my readers