Curiosity Killed My Privacy.

Perhaps I’m making assumptions here, but when I notice people staring at me as I go about my business, I don’t think it’s because of my goddess-like beauty. I think it’s got a little more to do with how exactly I’m going about my business, that being in a wheelchair.

When out & about in Leeds city centre I regularly see other wheelchair users; I often see ten wheelchairs in as many minutes. Admittedly Leeds is the most disabled-friendly place I’ve ever been, certainly more so then London or Manchester, so perhaps wheelchair-users are more likely to be seen here. However, I’ve even spotted an increase in wheelchairs being visible in high-profile TV series & films. Surely by now, the novelty of seeing someone disabled has worn off.

Being stared at as if you were a circus act is beyond irritating, & particularly in adults only serves to make people look gormless & dim-witted. However, unless a well-placed lamp post is involved, it tends to be a relatively harmless practice.

Sometimes, however, the staring is accompanied by questions & I am expected to answer those questions. It doesn’t matter if I am in a hurry to get somewhere, or simply don’t want to recount the miserable tale of how I ended up in a wheelchair for the tenth time that morning; if I don’t provide a sufficient answer, I’m the rude one. More & more I’ve taken to ignoring such questions from strangers on principal; I should be able to go about my business just like anybody else, without having to justify my existence at regular intervals. I have more than made my peace with being considered rude; it’s not like information on disability is particularly hard to find.

When it comes to staring & questioning there is one group I never mind, & that is pre-school children. There ignorance is born of innocence; they lack social inhibitions, & unless someone in the family is disabled, they probably won’t encounter disability until at least school-age. However, at school children have daily social interactions, & since disabled people are no longer separated & institutionalised as in previous times, they are highly likely to encounter some kind of disability as their horizons expand. If nothing else, they should at least know that staring & pointing is considered rude.

It is not my job or my responsibility to educate children. In fact, on more than one occasion I have been chastised for trying to parent somebody else’s child when answering a question. The expectation that disabled people do not have the right to privacy, & must be completely transparent with total strangers about complex & intimate symptoms, is ableism in a nutshell.

Nor is disability something to be ignored, being hushed & hurried away leaves the impression that that is the appropriate response to seeing someone disabled, not treating them as simply another person.

Disability is something that exists. Parents & teachers have a responsibility to teach children that despite our differences, we are still human beings. As a childless person I have no right to tell people how to parent their children, but as a disabled person I should have the right to set boundaries concerning my privacy, & for those boundaries to be respected.

M.E Awareness Week: Day 5.

The Return to School.

CAMHS had been informed of my suicide attempt of course, but we still had no response from them. It was a case of biding our time.

By this time mum was seeing countless doctors and specialists, and I had completely lost track of them. I could barely keep track of my own existence. I only knew that mum had occasional asthma attacks, and the overactive thyroid was causing the odd bout of weight loss and sickness, but again, it didn’t appear to be too drastic.

I decided to return to the same high school, despite my previous treatment. The teaching standards were high, and I knew that I could make new friends, who would be trustworthy and kind. After a few weeks fighting, the school agreed to give me an assistant to help me in lessons and around the building. I would be taking AS-level Maths, Chemistry, Biology, and Physics; I would need help with experiments, and fetching equipment and books. I would also need regular access to painkillers, as I was stepping up the work-load by a huge amount. I would also need someone to befriend me over the first few days as I tried to make new friends. I found it hard to trust new people, so the first part would be rather lonely.

The only problem that remained was transport to and from school. Mum still couldn’t push the wheelchair because of her bad asthma, and Dad worked 30 miles away. We applied for council transport, but we were turned down due to a lack of funding, even after appeal. The reasons stated were “not being able to get down (our) road”, and “(I) didn’t legally have to be in education”, as I was over sixteen.

School refused to help at first, so we relied on other people to push me back from school. Dad managed to push me in every morning. The friends in our community helped greatly, but most of them had children of their own to pick up, or were elderly, or had jobs to attend. School frustrated me, as they expected me to get straight A’s, but refused to help me at every little step. Having to fight for the smallest of resources put a huge strain on me, and I knew that if it continued for much longer my grades would really begin to suffer. Then, to add insult to injury, I noticed how school helped the kids who didn’t work, and who purposefully underachieved. They got transport to and from school despite perfect health, and trips out on a regular basis. It seemed really unfair.

Eventually, schools health and safety officer noticed how bad our situation was becoming. He looked over legal forms, discussed financing, and after plenty of arguing with officious members of the admin team, it was decided that one of the care assistants could push me home every night, if dad pushed me in every morning. This arrangement was perfect and worked smoothly. It was a great relief to us

The assistant who was given the job was kind and friendly. She enjoyed pushing the wheelchair as it gave her a break of fresh air every evening, before returning to staff meetings.

As soon as this was all arranged, my school life became a lot easier, and I began to really enjoy my lessons. I was doing subjects I enjoyed, and didn’t have to bother with the things I didn’t like. My carers were happy to help fetch and carry equipment for me, and were thrilled to aid me in experiments, which were often fun. They became friends, and I could talk openly with most of them.

As time progressed, there were a few issues with lesson lateness, and access to respite care, but these issues were resolved as speedily as possible. They were annoying while they lasted; but all of a sudden school had become a lot more willing to support me. Maybe they had recognised how much effort and care I put into my work, but maybe pressure had been applied by the head teacher to support me more. I never found out, to this day.

My old friends mostly ignored me. This hurt me of course, but as I made new friends, I soon realised what a false friendship ours had been anyway, and was glad to be well shot of it. It did pain me to see how little I mattered to them, but my new friends were supportive. We were a mixed group; it was wonderful to be surrounded by such diversity.

In class, I had friendships with people who shared the same passions with me. I bonded best with the other girls, as we were distinctly in the minority, as was to be expected. However, most of the boys were nice too, and I formed some strong friendships with them. Very few of my class members judged me, and I returned the favour by not judging them. We were from all different backgrounds, and lifestyles. We were all different. Yet we all shared similar interests. The new found friends greatly eased the depression, and my studies distracted me. I threw myself into them with all the vigour that I could muster up. I had found happiness again.

I loved my subjects. Despite miserable grades at the beginning (D’s and E’s), I still found enthusiasm and passion for them. I felt that for someone my age, in my condition, I was doing well.

Maths was hard, and not all of what we learnt was useful, however, I learnt lots of logic skills.

Physics was a very small group, 4 of us all told. This meant we got a lot of attention of the teacher, and we had a lot of fun. The seemingly ridiculous ideas and theories that Physics proposes became perfectly sensible to me.

Chemistry was mostly about industry, and was both useful and interesting. I found plenty of time to practice my logic skills, and also developed a lot of memory aids, as Chemistry required quite a bit of memorising equations.

Biology was my favourite. It opened a door to me; there were things the human body could do, that I never even had dreamed of. I saw how beautiful and precious life was. I learnt how a single heartbeat is controlled, how disease spreads, the inner workings of the lungs, and the digestive system. I studied DNA, microbes, plants, animals, taxonomy, epidemiology, and humans. I was in love. I didn’t want to leave the lab at the end of the lesson, and often went home and studied hard. It never felt like study because I loved it so much, I knew that this was what I wanted to do as my career, for the rest of my life.

It was a relief to my parents that AS-levels were such a joy to me. For the first time in just under two years, I was happy. I actually wanted to get out of bed and attend school every day. There were rough patches, but the good outweighed the bad.

TEDx: Disability in Education & Employment.

Disability presents a lot of challenges in day-to-day life. Something as simple as shopping can become Mission Impossible, so what happens when it comes to the more complicated stuff like school & work?

In the past 5 years I have finished high school, graduated from university, & had 2 jobs. There were problems I faced purely in relation to the disability in each of these situations, with the transitions between them being equally difficult. While I’ll be discussing my personal experiences of education & employment with a disability, I have been told that many others have encountered similar situations.

 

My high school was a gritty reboot of Waterloo Road. It was underfunded, overcrowded, & we had our own policeman assigned to the school. The standard of education was actually excellent, but pretty much everything else was falling apart at the seams just weeks after opening.

From the day I first fell ill at age 14 I encountered problems. The attendance team hounded me like I was a criminal, I was pushed back into P.E & dance far too hard far too soon, & I was initially denied the right to use my wheelchair at school. Once I had the right to use my wheelchair I was denied access to the support I needed, namely someone to push the wheelchair which I couldn’t physically do myself. It took up until I started my A-levels for me to get the help I required, and even then assistants would frequently fail to turn up, leaving me stranded.

While in the final year of my A-levels we were applying for university. At the time “UCAS points” were all the rage; if your grades fell a little below the requirements for the course of your choice, many universities would accept these points & allow you to enroll. UCAS points could be obtained by doing things like the Duke of Edinburgh badges, & raising money to go abroad over the summer to do charity work in developing countries. If you didn’t take up UCAS point opportunities you wouldn’t be penalized by the school so much as shunned, your efforts deemed unworthy, even if you couldn’t obtain UCAS points because not one scheme was willing to adapt for a wheelchair user.

I went the traditional route & focused on my education, except here I was penalized for not constantly retaking exams to get marginally higher marks. I had decided to put all of my efforts into studying for fewer exams, as studying for too many while chronically ill would have been disastrous. I got the grades I needed to go to university, which I hadn’t been when doing the constant re-sits demanded of me, but even when going to collect my final exam results I was reprimanded for being “too lazy” to take re-sits & get even higher marks.

It’s safe to say I was relieved to leave school & head to the University of Leeds School of Food Science & Nutrition.

 

University went much smoother than school. By this point I had been able to save up just enough money for a second-hand powered wheelchair so had gained independence. I was not penalized for taking fewer extra-curricular activities & focusing on my degree instead, and was supported by my lecturers & tutors. I had accessibility issues just like anywhere else, but these I could cope with.

There was the option to take a year out of my degree to study abroad or go on a work placement. I couldn’t afford international study even if I’d wanted to, but I did invest a great amount of time looking at potential work places. Many placements were based in factories & professional kitchens; not the most wheelchair friendly of spaces. Placements in dietetics were impossible to find as they all required you to have tailed a dietitian previously, something which is almost completely prohibited for patient safety. Many placements wanted extensive work experience in their candidates, but working on top of studying was simply not feasible for someone with a chronic illness. The remaining placements were all unpaid, & I simply couldn’t afford to live somewhere unpaid for an entire year. Yet another opportunity was closed off to me.

I went straight through my degree, during the final year of which I applied for graduate jobs, often facing the same problems as those for placements. I went to careers fairs. I went to the career’s advisor hubs & job-hunters based at the university. I booked one-to-one sessions with an advisor. Not once in any of these meetings could someone provide me with information about the accessibility of the jobs on offer, or even where I could find this information aside from blatantly asking with each application. Despite the many laws & policies meant to prevent prejudice, many potential employers seemed to suddenly lose interest upon discovering that I used a wheelchair, failing to reply to further messages, or simply terminating my application on the grounds that they couldn’t get me in the building.

I looked into progressing into dietetics as a post-graduate, but was bluntly informed that I wouldn’t pass the health checks needed to take the course. I couldn’t figure out how on earth using a wheelchair inhibited my ability to help people with their diets, of course assuming that the NHS would be the most accessible employer out there. After all, if you can wheel a bed through a hospital, you can get a wheelchair through, right?

 

My first job was in the NHS. The pay was barely above minimum wage, the hours were so pitiful that my annual earnings actually were below minimum wage, and it amounted to little more than pen-pushing, but it was a start. I proudly went to collect my ID badge from the HR department, rolled up the ramp & through the automatic door, & straight into a set of stairs. I looked around; there was no lift or other accessible entrance, & HR was 2 floors up. So I called them. At first, they simply refused to come down, but once a delivery driver had noticed my plight & marched up the stairs on my behalf, they were more obliging.

I started my job & almost immediately found that my credentials didn’t work when logging into my laptop. I called IT & they told me to come to them. I explained that given that they were 3 floors up without a lift, I couldn’t. After days of arguing they finally came out to us. This would happen every time I encountered an issue with my work laptop, but eventually the arguing lasted minutes instead of days. That was until one of my superiors decided I was making a fuss about nothing, told IT not to “pander” to me, & booked me an accessible taxi out to them before I’d even arrived in the office. It took the entire working day for me to get there & back as IT refused to come down to me, & upon my return I couldn’t even get into the office as my colleagues had blocked the door. I quit a week later; and that’s not even mentioning the fact that they failed to tell me about the Access to Work scheme, & once I had gone through the process they refused to follow the advice provided anyway.

 

I didn’t apply for any other NHS jobs, knowing I’d only encounter the same issues wherever I was. Instead, I predominantly applied for jobs at a place I knew was accommodating; the university. Less than 2 months later I was being trained for my new position at the Clinical Trials & Research Unit in the medical school. I didn’t go through Access to Work again, but the in-house occupational therapist recommended a specialist mouse, keyboard, keyboard-tray, desk, & chair to help me work, all of which I received soon after starting. I had issues with lift access & instead of being reprimanded, I was granted access to another lift that only a few of us, mainly disabled staff & students, could use. Office cubicles were even rearranged so that I could have a wall socket to charge my wheelchair.

 

Many accessibility issues relate to attitude over the facilities provided. This is true of educators, employers, health care providers, customer service workers, & people on the street. If you think this is untrue, just remember the current political attitude:

If a disabled person is not in education or employment, they’re a lazy scrounger living off the system, but if they do happen to work or be in education, they’re faking their disability.

Diary of a Disabled Person: LIVE!

I have been asked to give a Ted-talk at the Disability Labour Association on Thursday 14th March, at Leeds Civic Hall.

So, if you want to hear the dulcet Yorkshire tones behind the blog with your own ears, be there from 6.45 – 8.00 pm.

If you’re really nice, I might even take a selfie with you (cake bribes optional).

Image description: Facebook event for the talk reading "DLA: Disability Labour Association. 14th March 2019, 18:45 - 20:30, West Room, Leeds Civic Hall."

Nutritional Nutters.

Some would say that completing a degree with a disability is quite an achievement, but as a Millennial even the greatest of achievements pales in comparison to the terrible flaws displayed by my generation that will surely be the end of society itself. People will always find faults if they are looking for them and as such, it has been made apparent to me that being disabled with any sort of medical knowledge is completely incompatible, because surely everyone with this knowledge is in perfect health all of the time and would cure themselves with their knowledge should they fall ill.

Approximately a year ago I was diagnosed with iron deficiency anaemia, which I have since recovered from. At the time the response I invariably received upon revealing my deficiency to someone was, “but I thought you were a nutritionist”.  The truth was that a tablet I was taking limited the absorption of iron in the intestine and despite my dietary iron intake being perfectly adequate, most of the iron was quite literally being flushed down the toilet. Of course, despite the fact that I have spent three years and thousands of pounds dedicated to the subject, the person I was speaking to knew far more than me having read about it on Wikipedia, and I was just making up excuses for being a poor nutritionist. Just about anyone with any medical knowledge or experience in a clinic will roll their eyes at this point; while I can hardly criticise using the internet, because well… I’m on the internet, it can be the bane of our lives.

The same logic has been applied to my disability; admittedly there are a few dietary tricks that can help maintain energy levels throughout the day, but certainly there is no scientific evidence showing a particular diet that will immediately cause me to leap out of my wheelchair completely free of disease for the first time in years. The closest I ever get to feeling like that is when someone offers me chocolate cake, because although I know the many ways in which cake could potentially kill me, I like cake, particularly the chocolate kind. The fact that I am chronically ill is frequently used to evidence my incapability in my chosen field, which is almost as annoying as receiving a smug look before being told nutritionists shouldn’t eat chocolate cake. Why this would apply specifically to nutritionists and no other human being on the planet is beyond me, but clearly I know only that I know nothing.

There is also one deep flaw in the thought process behind such accusations; nutrition is very rarely used as a cure, but is actually used to treat a disease or manage symptoms. Ask any diabetic this and they will confirm that no matter how many visits they have with a dietitian, altering their diet will not make their pancreas behave itself, merely managing the consequences instead. Likewise I use nutrition to help me manage the symptoms of my condition, not to cure it. By my albeit somewhat biased logic, this makes me an even better nutritionist, as I have experience in altering the diet to suit my needs while still satisfying my cravings for chocolate cake. It is by stating that nutrition rarely cures to people I deem to be “Nutritional Nutters” that I return their self-satisfied smugness, in a dish that is far more nutritious when served cold.

School, Sickness, and Stupidity: Part 2.

Outside of school I had progressed to using a manual wheelchair, and I requested permission to use my wheelchair in school. After three months of arguing that they couldn’t accommodate another wheelchair on top of the few wheelchair users already at the school they relented; I could use my wheelchair on the school premises but was refused assistance to push the wheelchair, and access to the disabled toilets. They claimed this was because the paperwork that would allow them to assign me a care assistant wasn’t in place, despite having initially claimed that this paperwork was not essential to receive support. I had to rely on my peers to push me around school and I became a job that needed doing, losing friends.

As my final GCSE exams approached I requested special conditions to accommodate my illness, such as a scribe and extra time to compensate for the pain I endured when writing quickly. The first set of exams had been and gone before the school even dealt with the paperwork and eventually it was decided that I could have extra time, but not a scribe. I was also refused a room apart from all the other students and this meant that I had to sit in the main hall while the others exams were collected, being called names and having things thrown at me because of my “special treatment”. The incessant chatter of all the students who had finished their exam was so loud I couldn’t concentrate, rendering the extra time almost entirely pointless. By the time I had completed my exams I couldn’t get out of the school fast enough.

It was during that summer break that I attempted suicide.

I relinquished all responsibility for my education, leaving my mum to pick up the pieces. She searched for other schools or colleges where I could sit my A-levels but either their courses were already full, or they weren’t accessible. Left with no choice but to return to the same school mum decided to speak to the head of the post-GCSE team.

How mum managed it I don’t know, but when I returned in September I had a carer to push me around school, access to disabled toilets, and was permitted the use of a separate, quiet room for exams. What I do know is that mum had to attend many meetings and sit through many heated discussions. She presented medical evidence from the doctor and the physiotherapist, she showed them how it was physically impossible for me to push myself in the wheelchair, and she spoke with the most senior members of staff at the school to force their hand. I was denied access to hydrotherapy, one of the only medical techniques that genuinely helped me, which was offered to every other disabled student at the school. I was still denied a scribe for exams, but I was too relieved that I wouldn’t have to sit my future exams in a room full of hatred to complain.

We were denied access to transport to get to and from school and since dad was working and mum was sick, we had to rely on local friends to push the wheelchair. I was told that no one at the school was insured to push a wheelchair off the premises and they refused to help us, while still demanding my attendance. One of the teaching assistants noticed my plight and told the administration team not to be so stupid; eventually she took to pushing my wheelchair off the premises, insured or otherwise.

Inside the school some of the carers were excellent. Some were not. I was regularly late for class because carers failed to turn up on time, if at all. Approximately once a week I would be left in the disabled toilet while my carer wandered off to have a break, and I had to sit there until someone noticed me waiting. When I spoke to the head of the care team about this, I was reminded that there was no official paperwork saying I needed support, and therefore all support could be withdrawn quite easily. My silence on the matter henceforth was for fear of what support might be relinquished otherwise.

Since I was studying the sciences, practical work and experiments were inevitable. The school argued that they were not insured to provide support in these cases, and that meant that I was expected to walk around a laboratory doing my own experiments. Fortunately these were not a frequent enough occurrence to cause me major issues, and soon enough my teachers began to provide what support they could while simultaneously keeping an eye on the class.

It was also expected that students stay behind out of school hours for extra study, and those who didn’t were penalised. However care support did not exist outside of official school hours, meaning I was expected to attend extra-curricular activities alone, including on one occasion an assessed chemistry experiment. This resulted in further exhaustion and pain but I could say little to those managing the special needs department out of fear.

Finally I managed to gather the funds to buy a second-hand powered wheelchair, giving me the freedom to travel to and from school myself. I still needed a little help getting around the building, but I was not as heavily dependent on this as before. Given my past experiences I did not ask the school permission to use my powered chair, but simply turned up in it. They couldn’t turn me away without the attendance team tearing them to shreds.

By the time my school days drew to a close I was so sick of the place that I would have given anything to leave. On results day I was so relieved to know that I would be progressing to university that I almost cried. I went and said good bye to the students and members of staff who had helped me, and ignored those who hadn’t.

It is perhaps no surprise why leaving school was one of the best things ever to happen to me.

School, Sickness, and Stupidity: Part 1.

It’s been a while since I left school and I still don’t talk about it much. There’s far too much raw, pent up emotion for me to discuss it coherently, but writing it all down should allow me to give a logical account of my experiences.

My secondary school was situated at the other end of the road I lived on and was just visible from my parent’s bedroom window. It was set on quite a steep hill meaning that one side of the school had an extra level built into the hillside, and it had a central forum where large gatherings and assemblies took place, with all the classrooms built on a loop surrounding this. The school opened just as I transferred to high school meaning it was brand new; the old, dilapidated school it had replaced was being knocked down a few metres away from the shiny, new building.

I was half way through Year 10 (USA 9th Grade) when a virus decided to chow down on the protective tissue surrounding my brain. Given that our GP’s surgery was closed for the day and no other medical aid would physically come to us unless my condition grew significantly worse, we couldn’t get proof that I had, indeed, suffered such a serious illness. Unsurprisingly the school was skeptical as to my plight without the necessary proof, and stipulated that I still sat my GCSE biology exam just one week after first falling ill. The school also stipulated that I wear my uniform, including the stuffy and uncomfortable blazer, but assured my mum that I would be provided with a well ventilated room and access to drinking water.

A couple of days after first falling ill I started to revise as much as I could, which in all honesty wasn’t much. I felt so rotten I don’t think I took much of it in anyway. Come the day of the exam I hauled myself out of bed early, ate a little breakfast, pulled on my uniform, and went to school. I was put in one of the hottest rooms in the building where none of the windows opened, and I wasn’t even allowed to get water from the tap outside. To make matters worse another girl sitting the same exam had also been ill, and therefore was in the same room as me. She turned up extremely late without her uniform and I was made to wait to start the exam until she arrived. All I remember of the paper is wanting to use it as a pillow for my aching head and stumbling out over an hour later wanting nothing more than to be left in peace.

Another week of bed rest later and the attendance team at my school were ringing up constantly, nagging my mum about my absence from school. Over the phone the doctor had advised I take several weeks off to rest following the meningitis, but without the note our case would not be heard. I was pushed back into school on a part-time basis while the attendance team continued to pressure me and my parents until I was back full-time. This included participation is both sports and dance classes despite my mum trying her best to make them see reason.

A couple of months after sitting the exam the results came out. I had obtained a grade B, which I was pretty pleased with under the circumstances. Unfortunately a grade B was below my target grade and as far as the teachers were concerned, this was inadequate. It was quite the fight to prevent being entered for a resit of the exam, and being told that my best efforts under adverse circumstances were worthless did nothing for my self-esteem. I felt like my entire life was falling apart around me into an irreparable mess and nearly everyone was against me. I tried to put it all out of my mind and concentrate on my future exams, keeping my head down and staying out of trouble, but this was harder than I could have imagined.

Shortly after receiving my exam result I was pulled to one side during a gym lesson for a “quick discussion”. What followed was a lengthy and entirely one-sided lecture on how it didn’t matter how academically gifted I was, being physically ill would render it all pointless. She then told me to start running on the treadmill, not walking. Had I been the more confident individual I am today I would have reminded her to have her quick discussion with Steven Hawking and see what his reaction was, but I just nodded mutely and did the bare minimum that would qualify as running to appease her. I think this was the point where I started to truly hate school.

Eventually the summer holidays arrived for which I was grateful. Over the coming weeks I regularly saw the GP, running tests until I was finally diagnosed with Chronic Fatigue Syndrome (CFS). Now backed up with medical evidence I was finally allowed to drop dance and sports, but it took a further six weeks to convince the school that my timetable was still too much for me to cope with. Eventually I was allowed to drop French and I was on a timetable that I could manage while I was so ill. Even so I still had to take some time off school due to illness, made worse by the stress of the constant hounding from the attendance team.