Those of you that follow my blogs will know how proud I am of being a disabled person who is living independently. I honestly believe this is my greatest achievement so far, however, what most of you might not be aware of is the long and difficult journey I had to go on in order to gain my independence, fighting local authorities across two cities and defying the odds by often proving wrong teachers, doctors, and even some carers. In light of my new podcast called The Road to Independence where I will interview other disabled people about how they were able to gain their independence I wanted to do a blog on my own journey, the issues I have faced, and how I was able to overcome them. This is my road to independence.
The doctor who knew nothing
For as long as I can remember I have always believed that one day I would be able to live on my own, in my own house. This is a very strong belief for someone who was diagnosed with Cerebral Palsy at the age of 18 months and who as a young child relied on his parents for everything. But I got the strength of my convictions from my parents, especially my mum who was after I was diagnosed with Cerebral Palsy by the family doctor in Zambia, wanted me to get a diagnosis by a doctor in this country. It was at the Royal Infirmary in Leicester where my journey to independence began and in a doctor’s room, my mum was given the perfect motivation to drive me forward and help me complete my journey. Wallahi (swear by Allah) I wish I could remember the name of this doctor because I would name and shame right here right now and I genuinely wish I could come face to face with him in that room where my mum had the appointment to diagnose me. As this doctor told my mum that I had Cerebral Palsy and she should lock me in a room for the rest of my life as I would “never achieve anything “. Not only was he completely wrong but the irony is it was probably this speech that gave my mum the courage to drive me forward and made me the man I am today. What do doctors know?
Going to Nottingham
My journey of independence goes hand in hand with the special education system in this country, I am a product of that system and despite what the government of today would let you believe I am direct proof that the special education system works, and not only does it work but for some disabled people it works better than the mainstream education system and even though the government is now trying to push more and more disabled people into mainstream education I believe that this is a mistake and hopefully this blog will go some way in proving this argument.
Before I went to school I went to a local nursery on St Peter’s Road in Leicester two days a week but alongside this, I also went to Rutland House School for Parents in Nottingham where I was introduced to Conductive Education. For those who don’t know Conductive Education is a form of exercise that was developed in Hungry as a way of teaching disabled people with movement difficulties how to gain control of their movements. Unfortunately, the brand is rather scoffed at in this country, but it works and once again I am a product of the Conductive Education system.
While at Rutland House me and my mum met a lady called Maizy who would have a big impact on the early part of my independence training, she was able to recognize my potential. Maizy was one of the teachers at Rutland House who worked in the school for parents department she was trained in Conductive Education and push me while I was there. She was able to tap into my determined nature and she use this in her Conductive Education classes in order to help me push the boundaries of my own disability. Most people would have never heard of the term plinth or even a ladder-back but while I was at Rutland House these two objects were my best friends, even though I hated them. A plinth is basically a long wooden table with wooden slacks on top of it. It’s designed for disabled people to sit at and they can use the wooden slacks to hold on and gain their balance whilst sitting or standing. It was also used for us to lie on to do our morning exercises. A ladder-back is basically an instrument used to help you walk, designed like a ladder with skies on the bottom of them the whole idea was you could hold on to the rungs depending on how tall you were and then you could push the ladder-back forward and it would act as a balancing tool as you took a step forward. This instrument allowed me to take my first steps and at the age of three and with assistance I finally felt what it was like to walk.
As I came to the age for my parents to decide on my primary school placement Maizy advised my mum and dad that Rutland House was not suitable for me and that instead we should look at a school in West Sussex called Ingfield Manor, which was one of the best special needs schools in the country at that time. Obviously, West Sussex is three and a half hours drive from Leicester, and that’s on a good day, so my parents had the difficult decision to make about whether to let me go to a weekly boarding school at the age of four years old. I know this was a difficult decision for them and not everyone agreed with it but they felt it was the best thing for my development and in all honestly I am so grateful they did.
Our first fight
Maizy did warn us that it wouldn’t be easy for us to get me into Ingfield as we would have a battle on our hands with the Leicester local authority as they would want me in a local school. Maizy was right, as we applied to the Leicester Education Authority (LEA) they had already earmarked a local special needs school called Ashfield for me to attend. The major difference between the schools apart from the fact that one was a boarding school and one wasn’t was that Ingfield had the Conductive Education program built into their national curriculum, whereas Ashfield relied on physiotherapy and hydrotherapy in order to help students with their disabilities. We made our case to the LEA regarding why we thought Ingfield was a better fit for me and we were left waiting for their decision. We waited the entire summer holidays for the LEA to get in touch with us but with four days to go until the new term started, we still hadn’t had an answer. So my mum and dad decided to go to the LEA’s offices fully equipped with sleeping bags as well as enough food to last a couple of days, they informed the receptionist that they would not be leaving until they received an answer regarding my primary school placement. After another two hours of waiting and we finally got the result we wanted. Our case worker, Tony Dunsby called us into his office and explained to us that LEA had decided to fund my primary school placement at Ingfield Manor. Naturally, we were overjoyed by the news, However, it only left us four days to buy everything I needed for boarding school I.E clothes and other essentials. Mum and dad also had to get me mentally prepared to be living away from home five days a week and those four days were manic as the entire family chipped in and helped.
Moving away
You would think that moving away from home at the age of four would have been quite daunting for me, and at the start it was. However, I loved Ingfield, every minute I spent there was full of fun and laughter but it was very difficult work as well because you were constantly being trained to become independent. My school day would begin at 7:00am, the carers would come into our dormitory and assist us to help ourselves to get ready. They didn’t do it for us they didn’t put our trousers or t-shirts on for us, we had to do that ourselves but they would help us if we were struggling with certain things, for me that was putting my socks on and in the seven years I spent at Ingfield I never managed to master this which was extremely frustrating for some of the carers. However, all the help that we were given was given with love and affection, never once did I feel that I was being made to do something that I physically couldn’t do, it was all about pushing us to our full potential and letting us discover the limits of our own disability. 8:00am was breakfast and we had to walk to the breakfast canteen from our dormitory. This would have only been about 100 meters if that but it was significant because at no point in the school day did we use our wheelchairs from the minute we got to school our wheelchairs were taken away and we had to sit either on a stool or if you were like me who didn’t have a great deal of balance I had like a wooden chair that I could be strapped into. Breakfast was again the same ideology, if you needed help to eat the carers would be there to support you to help yourself to eat, so with me carers would put a spoon in my hand and then guide me to pick up my food on the spoon and guide it into my mouth, this was the Conductive Education way and the whole point of this was to help you become as independent as possible. Even from the age of four I was receiving training, conditioning my mind so I would be prepared when I become an adult to live independently. The school day began at 9:00am but instead of going straight into lessons we had an hour of Conductive Education exercises, this would help loosen our muscles as well as to give us an understanding of how to control our bodies and I found this very useful. Our first lesson began at 10:00am and this was the unique way Ingfield managed to combine the Conductive Education program into the national curriculum for a more holistic approach. I spent seven years at Ingfield and like I said earlier I loved every minute of it I grew as a child and began to understand how my disability affected my body. The most important thing I learnt from Ingfield was I could achieve anything if I put my mind to it, most of the teachers and carers filled me with this confidence and it wasn’t just giving me lip service, every student there in my time was given the confidence that if they want to gain independence they could, they just had to grab it with both hands when the opportunity came.
Fighting for my education
In 1998 it was time for me and my parents to decide on my secondary school placement and for me, there was only one school I wanted to go to. Lord Mayor Treloar’s school in Hampshire was renowned for being 1 one of the best special needs secondary schools in the country. Once again this was a boarding school and at this point I had become used to being away from home, some might say a little too used to it but that is a debate for another day. In my head, Treloar’s school was the only place I wanted to be, although they didn’t do Conductive Education per se they still adopted the same holistic approach as Ingfield and this is what really attracted me to the school. Another big bonus was the amount of after-school activities Treloars had, bursting with about 20 different after-school activities every day the school just seemed like an exciting place to be. However, there was one thing standing in my way, the LEA and my old friend Tony Dunsby, who this time were not backing down easily, but we had a plan. In 1998 Labour had been in power for a year and the then Prime Minister’s wife, Cherie Blair, decided to pay Ingfield a formal visit. Labour got into office with the slogan “education, education, education” and with the LEA point blank refusing to fund my placement at Treloar’s and instead insisting that I should go to Ashfield school I decided to seize the opportunity with the Prime Minister’s wife and wrote her a letter detailing my situation and why I wanted to go to Treloar’s school. Luckily I was one of the students who was selected to show Mrs Blair some of the computer equipment that we used at the school so I was actually going to meet her twice that day, once showing her the equipment and the second time in the main hall where she came to meet all the students. It was agreed by the head teacher that I should give my letter when I met her the second time, However, me being me, bold and courageous with a certain disregard for the rules I thrusted my letter in front of Mrs Blair while I was introducing her to the computer equipment. Now in my defence there was a certain amount of logic to this decision, yes admittedly I just wanted to give her the letter but I also knew there was a chance that she might open it and at least begin reading it while she was being shown around the school so when I met her for the second time I was hoping I might get a little bit of an insight into what she was thinking. Bold yes, a bit naughty, definitely, but the plan worked and when I met her in the hall she openly admitted that she started to read the letter and that she would reply once she finished reading it. Naturally, I thought a reply would take time however to my shock it was only a week later that a carer burst into my dormitory and announced: “Immy you’ve got a letter”. I didn’t really think anything of it at the time until she said “it’s from number 10 Downing Street”. I grabbed the letter from her and ripped it open to find a handwritten letter from Cherie Blair herself saying that she knew someone who was willing to help with my case. She gave me the number of a special needs solicitor called Felix Moss, she had already forwarded my letter to Felix and he was awaiting a phone call from my parents. Little did I know at the time that Felix had already been recommending to us via a mutual friend, Shiela Fuller. Shiela had a disabled daughter and she had gone through the same process we were going through at the time, Felix was her solicitor so naturally, she recommended him to us, Shiela was also a big Liverpool fan as was Cherie Blair, and for me, at 11 years old I thought this had to be a sign, looking back on it now it was just a coincidence but Scousers stick together so it was all good.
We met Felix later that month and he straightaway got to work on my case, what impressed me about him was he understood that not only did I have full mental capacity and was able to make decisions on my own, an argument that the LEA was trying to use against me, but he also understood that for me this case wasn’t just about my secondary school placement it was about the independence journey I was on, I had a clear idea in my head of where my life was heading even at 11 years old and I knew what I wanted to achieve, not just academically but also in terms of life experience. I didn’t want to be reliant on my family for my entire life, I wanted to get to a place where I was self-sufficient and able to live independently. Yes admittedly I didn’t have a clear picture of what that would look like but I was 11, the point is I knew what I wanted, a point that the LEA was not understanding, and a point that Felix got within a few minutes of meeting me.
It was coming toward the end of the academic year and my last at Ingfield. Felix knew that realistically the only way we were going to get the LEA to change their mind was by taking them to a tribunal and the odds of us getting a tribunal date before the beginning of the next academic year were just impossible, the LEA suggested that I start at Ashfield until the tribunal date so that I didn’t lose out on my education however I wasn’t keen on this idea and neither was Felix. After a lengthy with my parents, we all agreed that the best thing for me was to keep me out of school until the tribunal date, which by the end of summer we had got a date for December that year. After spending four months at home the date finally came for the tribunal, Felix advised that I didn’t attend as he was worried about the emotional toll an experience like that would have on me. Hindsight is always a wonderful thing and looking back on it I don’t know if Felix made the right decision here, I know there were conversations about possibly putting me on the stand at the tribunal so Felix could question me, the thing about that was the LEA would also get an opportunity to cross-examine me and I know our team was very reluctant to have me go through this experience. At the end of the day I don’t know whether this would have changed the outcome of the case or not, it probably wouldn’t have if I am being honest but I do wonder whether this would have made a difference.
Allah had a plan
My mum always told me Allah (swt) knows best and I definitely believe this to be true, especially at this point in my life. Despite all the duas (prayers) we all made we, unfortunately, lost the tribunal. The day after the result came through Felix discovered that the educational psychologist for the LEA had actually lied under oath at the tribunal and he recommended that we appeal straightaway. Naturally me and mum jumped at the opportunity. However, my dad was a bit more reserved about the prospect of an appeal given how much time I had already spent out of school. Looking back on it now I do think that dad was right in what he was saying. That year was the first year I had been able to do Ramadan with the entire family, I also managed to keep all my fasts that year which was a big achievement for me and something I was bragging about for months after. Dad had also enjoyed having me home a lot more, little things like watching the Formula 1 with me on a Sunday afternoon instead of listening to the race in the car on the radio while dropping me off at Ingfield. Part of becoming independent is also knowing who you are and where you’re from, in my case, I am a Muslim, fundamentally this is the first thing I identify with when people ask me to tell them a bit about myself my answer is always I follow Islam. If it wasn’t for this period at home and the fact that even though we were going to appeal at high court but at the last minute the case fell through and I had to go to Ashfield I don’t know if my Deen (faith) would be as strong as it is today. Allah knows best I genuinely believe that even though his plan was always for me to become independent he also wanted me to still be attached to his Deen both physically and mentally as well as spiritually.
The Ashfield years
In March 2000 I started Ashfield school after being out of education for almost 16 months, this was a real shock to the system as all those lie-ins had now come back to haunt me with 7am starts but I soon got used to it. I did five years at Ashfield and a further two years in their 17-plus department. I did grow to like Ashfield and I made some truly amazing friends and memories. However, even though I was excelling academically and got 9 GCSEs Ashfield didn’t really do a lot in terms of developing my independence. If I am brutally being honest the school really didn’t offer anything in terms of independence training, yes there was a residential wing where students could stay one week a month but I only used this in my last couple of years at the school and I will explain why I did this a bit later on. There was an independence flat at the bottom of the wing that was meant to give the older students a bit of independence training but in my experience this didn’t really happen, the most independent thing I did in that wing was on my last night I decided to streak naked the full length of the wing with everything on display. There were meant to be four of us lads all doing it but the other three chickened out at the last minute so again me being me decided to go it alone, my argument was that the next day was our last day so really what could the headmaster do?
Brokenhearted
Despite the lack of independence training at Ashfield, there was one major event that shaped my entire journey and rocked my world to its very core. On the 6th of February 2003, it was time for my mother to return to her creator. After not being well for a couple of months unfortunately and tragically mum passed away and this completely devastated me. My mum was not only my mum she was my best friend, my right-hand person, and my partner in crime, literally everything I did I did with mum, and everything I had achieved up and until that point I had done with mum right behind me obviously dad was there as well but mum was the one who was always instilling me with the confidence that I could achieve anything I put my mind to. The entire family felt mums’ loss as she was such a big personality not just within our household but also within the wider family and community. Everyone felt the pain, but me and my sister were affected the most just because of how old we were. I was 16, my sister was 13 and we were both trying to find our place in the world, losing mum affected both of us massively and in my opinion shaped our future. In the weeks that followed the house just felt empty don’t get me wrong the family all supposed me and sister immensely, however, that empty feeling just wouldn’t go away and the only time I felt a bit of normality was when I was at school with my friends. Again this is nothing against the support my family gave, they were brilliant but within two weeks of mum passing away I made the decision that I was going to leave home. I just couldn’t do it, I could live in that house without mum it just felt so hollow without her, I kept this decision to myself for the next three years until I found a way to move out.
Plodding on
Quite a bit happened in the next three years, I got my GCSEs which I did over the course of three years taking my first lot of exams only three months after losing mum, that was hard but Ma’Sha’Allah I came out with 3 Cs and 1 D . This was much better than anyone of my teachers anticipated and gave me a great deal of confidence. I also got elected into the Young People’s Council of Leicester. This was a council made up of children from the ages of 11 to 17, we would meet up once a month in the council chambers to discuss a wide range of topics surrounding young people. After running in two elections and missing out on both times by the narrowest of margins I finally got elected in 2003, winning by a landslide with over half the votes from my peers. The election gave me a great deal of pride and finally, I was able to put the ghost to rest from the previous two elections. At the end of my second round of GCSE exams in 2004, I decided to stay on at Anfield and do two years in the 17-plus department where we would be put on a course called ASDAN which stands for Award Scheme Development and Accreditation Network. My honest opinion is ASDAN was a complete waste of my time as I honestly felt I didn’t really develop under the course. If I am being brutally honest my two years in the 17-plus department were very mixed. We were promised as well as ASDAN we would be doing an NVQ course which would require us to go to college one day a week. Well in my first year this was never organised, I don’t want to point the finger at anyone in particular but from what I understand there were several courses that we could have done in several local colleges, however, nothing was organised in time and by the time the school had made a decision the colleges had stopped enrolling. This was extremely frustrating for me and my fellow classmates, especially because the other class in that department were given a college course to go on. I felt very let down by the school, especially how going to college one day a week was meant to help with our independence training as we were going to have a chance to interact with other students in a mainstream environment, well at least that is how it was sold to us. We were told that they would look at getting us on a course after the Christmas holidays but that never happened as I finished my first year of 17-plus me and my classmates expressed our feelings towards the school’s hierarchy and we were promised that in the new academic year something would be sorted. The new year started and we heard nothing for about two weeks, yet again the other class started their college course and we were just left with ASDAN. It wasn’t until we as a class decided to voice our displeasure and frustration did our music teacher Mr Cheffings actually decided to take things into his own hands. He managed to sort out a performing arts BTEC course at Regent College in Leicester where we would go every Friday once a week. Now don’t get me wrong, performing arts isn’t something that I planned on getting into however for me I was just so happy that we finally had a college course I embraced it. People are probably reading this thinking what has this got to do with me becoming independent? Well, this was the first real fight I fought on my own, by on my own I mean without my parent behind me, don’t get me wrong dad would have stepped in if I needed him to but this was a fight that wanted to fight with my peers alone and it taught me a lot about standing up for what you believe in and how to diplomatically get your point over across, a skill I would need in later fights.
Finding myself again
It was in my second year of 17-plus when I finally found a way to become more independent. I had been silently exploring options and making dua for something to come my way and in November 2005 I had a light bulb moment whilst on a school trip to Hereward College in Coventry. Hereward was a special needs residential college that catered for a wide range of disabilities. At this point I had started using the residential wing at Ashfield as a way of coping with my mums’ loss and I began to get the flavor of a residential environment again however, the thought of going to a residential college had not crossed my mind until our trip to Hereward. Even as I walked into the college for the first time I didn’t really get the sense that this is for me, although I was very impressed my light bulb moment came midway through the tour of the college, in the canteen of all places, the enabler that was giving us a tour happened to mention that the college provides halal options for anyone that was a Muslim and straight away the light bulb in my head went on. As we got given a tour of the residential blocks and the facilities that were on offer my mind started ticking, and I mean really ticking. The more and more I saw the more impressed I became and when it came to the Q And A part of the tour I distinctly remember my hand shooting up like a rocket. My first question was about Ramadan and whether the college could meet my religious requirements as for me this was a non-negotiable. The enabler reassured me that all my religious needs would be met, I would have my own room therefore anytime I needed to make namaz (prayer) I could do it, and even though I wasn’t reading all of my namaz at that time I was hoping that if I got a chance to move out this would have an effect on my deen by strengthening it, so it was good to know that namaz and Ramadan were requirements that the college could meet. I had a million and one other questions but to be quite honest once I knew that the college could meet my religious needs everything else just fell into place, it was like Allah swt had planned the whole thing, and looking back on it now this all started with the passing of my mum. Allah hu Alam, Allah knows best and I genuinely believe this from the bottom of my heart. If Allah swt didn’t take my mum when he did in the manner that he did it in I don’t think I would’ve achieved half the stuff I had achieved since then. Losing my mum and the pain that went alongside that was the catalyst to me becoming independent and applying for a place at Hereward college. I came home that day and straight away ran the idea by my sister, this was a hard conversation for me to have as even though I wanted to move out me and my sister had been through so much in two and a half years I also felt an enormous amount of guilt for leaving her in an environment where I knew she was still grieving, we both were, that’s why she was the first person I told about wanting to apply to Hereward. My sister straight away understood where I was coming from and fully supported my decision so the next day at school I asked for an application form and started filling it in. Once that had been filled in the difficult conversation with my dad had to follow as I had to tell him that I wanted to move to a residential college, I knew my dad wasn’t happy about this and to be honest, his reasons were fair, after losing mum dad wanted to keep the family together and I understood this but I also had to do what was best for me and after talking to my Aunty about it and she very quickly got on board with the idea she managed to convince my dad and this was the best way forward for me.
Moving out again
I had my interview for Hereward college in February 2006 and they were really impressed with my application, however, I distinctly remember they want me to show more desire for extra curriculum activities. Back at Ashfield I had become the editor of the school newsletter, Press Gang, as this was the career avenue I wanted to go down, I wanted to become a journalist and I knew that Press Gang was the key for me to get my independence by being accepted into Hereward. I got my head down, knuckled up, and treated the newsletter like my very own baby, every addition we came up with more ideas to make it professional and presentable. I had to remember that the school catered for children with a wide range of disabilities including learning difficulties so I wanted to make the newsletter accessible to all the students. So every addition we would have a picture on the back page where we would put the faces of members of the school hierarchy on different bodies in order to make fun of them. It started as a bit of fun but I very quickly realised that it was a very good way of engaging with students that had reading difficulties. Essentially the back page of Press Gang was what set it apart from any other newsletter that the school had ever published and essentially this is what made it a great success. I remember putting this on my UCAS application as obviously I had to apply for other colleges as well as Hereward, but in my mind, this was just a training exercise, a way for me to learn how to conduct myself in an interview, I had no interest in these other colleges at all, my eyes were firmly set on Hereward as was my heart and after being accepted by the college we had to wait for a special needs funding panel to give me the green light. In April 2006 a letter arrived for me in the post from the panel, nervously I ripped it open as I knew my entire future hinged on this one letter, I said Bismillah (in the name of Allah) as I ripped the letter open, well as my sister ripped the letter open for me and as I read it I just zoomed in on the word congratulations. That was it, I didn’t even bother reading the rest of the letter I just let out a massive scream of “get in” as I squeezed my sister, she was really happy for me as was the rest of my family and I knew that in September I would be moving to Coventry.
I spent two years at Hereward and loved every minute of it, being back in a residential setting really suited me and I blossomed as a result. The college gave me a chance to find myself again as I believed the trauma of losing mum had led to me losing a bit of myself. I was able to connect more with my religion as I had my own room where I could make namaz and the college even facilitated a way for me to go and read Friday prayers at Warwick university which was a big deal for me as this was the first time I was attending Friday prayers without my dad and it gave me so much self-confidence as well as a great deal of self-gratification. Hereward also enabled me to discover how to fit into society as a disabled person and this was something that I found priceless, I was able to find my place in the world and this is a crucial element of becoming independent. I also achieved three A levels at college, English Literature, Media Studies, and IT and even though this was the primary reason for me going to college I achieved so much more than just the A level qualification. Hereward gave me the realisation and the confidence as well as the tools I needed to become fully independent, I always say that college saved my life and I am not exaggerating by that statement. If it wasn’t for Hereward I would probably be still living at home. I always wanted to become independent and live on my own and Hereward was the first major step in me being able to achieve this. I finished college in June 2008 and I already knew the next step in my journey would be university. After visiting several in the midlands area, not including Leicester as I felt this was a little bit too close to home and I wanted to be able to spread my wings, I decided to apply to the University of Derby to do a BA degree in journalism and in August that year whilst on a family holiday in Mabletherpe I got a text message from Derby university offering me a place.
Controlling my care
University life came with a completely new set of challenges, as this was my first foray into mainstream education the university didn’t have any carers. This meant I had to build a care package for myself with Leicester City Council as the package needed to be in place before I knew my A level results. The idea was Leicester would build the package and fund it for the first few months and wherever I ended up at university the local council would take over the funding thereafter. Anyone that has had to be assessed for a care package will know how much of a fight this is, you have to literally fight for every hour, every minute and every second of care you require, it is easier trying to get water out of a stone. Alhumdulillah at this point my dad had become an expert in fighting for my needs and with his support Leicester City Council agreed to fund me for 24-hour support. The next part of the battle was choosing a care agency and in my experience this can be a real mind field as a lot of care agencies will promise you the world but many of them can’t live up to these promises for a number of reasons. Someone of them genuinely want to and someone of them might believe at the time of making these promises that they are able to live up to that part of the bargain unfortunately the reality is that many of these agencies are just not able to live up to the promises that they make, now I am not knocking care agencies at all and there are some really good ones out there I am just highlighting a fundamental flaw in the system. After talking to several agencies the one I decided to choose was Trust Health Care, partly because their offices were literally a five-minute walk from where I was staying in halls of residence but also the agency had a certain charm to it, it felt like they actually cared about me and my needs rather than just seeing me as a number. My first couple of years with Trust Health Care were brilliant, they gave me some amazing carers and on the whole, I was really happy. However, things changed in early 2011 when the agency was bought out by a company called Sterling Home Care, or Sterling Joke Care as I would call them. Sterling was a big national care company with offices all over the country however, I felt that because they were so big they didn’t have the self centred approach that Trust were really good at. They lost the personal connection with the clients and it was this factor that lead me to take the next step in my independence journey.
I graduated from University in 2013 with a First Class Bachelor of Arts Honors degree in Journalism and a few months later I moved into my own bungalow after months of looking at disabled properties in Derby. I realised at this point that the property market in this country really doesn’t cater for disabled people and after viewing a couple of council properties that were in very dangerous areas of Derby I decided to look at the private market. Unfortunately, this was not much better and I ended up viewing between 30/40 properties, non of which were accessible but none of the landlords were willing to adapt their properties to meet my needs and there in lay the dilemma, if there were no disabled properties out there then how was I meant to persuade a landlord to adapt one of his properties to meet my needs, it was an impossible situation. I was left with looking at the impossible choice of accepting a council property that was next door to a pharmacy and had needles all over the car park or potentially moving back home. As I said it was an impossible choice. Luckily just as all hope seemed to be lost a friend of mine got in touch with me and said she knew a landlord that just put a bungalow up for rent and he was willing to let someone adapt it if they needed to. Straight away I had a viewing that day and by the weekend we had agreed on what adaptations needed to be made and who was going to pay for what. Two weeks later I signed my tenancy agreement and after the adaptations were done I finally moved into my first home in April 2013. I had done it, the dream that my mum had for me when that doctor told her that I would never achieve anything had now become a reality as I was living independently in my own house.
Taking control
Despite this milestone moment there were still hurdles I needed to overcome, the quality of Sterling had dramatically decreased and even though I had some very good carers the organisation of the company was shockingly poor. I felt like I just become a number to them my needs had become a second priority and my opinions about how I wanted my care package to be run were being ignored. Finally in 2016 after things had reached breaking point I took the decision to leave Sterling Home Care and go onto Direct Payments where I would hire my own carers privately and run my own package. This came with its own risks as if one of my carers couldn’t get in for any reason I would have to cover the shift myself, however, given how I was practically doing that already with Sterling I decided to take the plunge and go it on my own. The Direct Payment system is not perfect but for me it works and it enabled me to cater my own care package around my own needs and this gave me a new level of flexibility and independence that Sterling was unable to offer.
Going for Umrah
There is one part to this journey that needs to be mentioned, it was always a dream of mine to visit the holy city of Mecca and perform the pilgrimage of either Umrah or Hajj, and once I had my care package sorted this was my next aim to actually go on Umrah with carers independently. Now there are three people that played a huge part in allowing me to achieve this dream, Kenny and Shamis were the two brothers that took me on the holy trip. When you think that they only started working for me 15 months before it was crazy how we managed to get the entire trip organised in that time, but Alhumdulillah Allah swt invites who he wants to his house and in February 2020 he invited me as well the two boys on a life-changing experience. However, while the trip was still an idea it was my main carer at the time, Steph, who was more than a carer, she is my sister in every sense of the word, she encouraged and inspired me to go. Steph had worked with me for six years at that point and she was always the one pushing me to become more and more independent. She gave me the idea of going on Umrah and once we had two Muslim brothers on the package it was Steph who drove that idea into a reality. She was the one that helped me organise the trip and talked me through the potential hazards, Steph believed that I could achieve this probably before I believed it and she prepared me for it physically, mentally, and spiritually. The trip had to be organised carefully as we had to make sure we had all the right equipment that I needed to keep me safe. Me and Steph researched online and we found that I could hire a portable hoist and a portable shower chair that we could take on the plane with us. I don’t want to take away credit from all the other carers on my package at the time, they all helped me with organising this trip in their own way, and obviously, without the boys, I wouldn’t have been able to go, so they deserve a massive shout out as well but if I am being honest the person that really got me there was Steph, May Allah swt reward her, Kenny and Shamis for their efforts, Ameen.
So as I sat in the Haram looking at the Kaba on the second day of our trip the realisation of what I had achieved began to sink in. From being in that doctor’s room as a baby and my mum hearing from that doctor that I would never achieve anything to completing my Umrah, it had been some journey and it was on this trip of a lifetime that I realised I had fully become independent. I don’t know where my road will go in the future I leave that in the hands of Allah but that pilgrimage is by far the greatest thing I have achieved and Alhumdulillah it cemented in my mind that I had finally made my mums dream of me becoming independent a reality.
Wheel of Thoughts 