Your Student Officer Blog

CN: Sensitive content, discussion about death, benefits, welfare reform and ableism.

Attempting to study or work while having a disability or disabilities can be tough. Don’t get me wrong; your natural reaction shouldn’t be to feel pity or upset at the difficulties and challenges faced by myself. Instead: feel anger. Society isn’t designed to accommodate disabled people, and this is particularly true for the fields of work or study. Society just isn’t accessible for competing in the workplace.

Universities have the potential to be one of the best institutions to help reduce those barriers in both work and study. They have the potential to shape and build a more accessible society, and ensure that a social model is adopted. They are, after all, an institution which is supposed to shape society. But the key word here is ‘potential’ – because this just isn’t currently happening in reality. The movement towards an inclusive society is a slow one in most areas, and even completely halted in others. There are certainly some people and some teams who are advocating for these changes and doing tremendous work to help move it forward, but unless it’s a collective fight, it will take much longer than necessary to achieve what we’re setting out to do.

I became disabled back when I was about fourteen years old. My condition was idiopathic, so something which doesn’t have a known cause. For me, studying became considerably more difficult. My teachers were all great in supporting me and offering to put arrangements in place to make sure I did not suffer academically. But I knew then that the cause of those barricades was something deeper and much more embedded.

Fast forward to University, I was studying for a Law Degree and still battling the same effects of my conditions, including chronic pain and chronic fatigue. Even though I was on a low contact-hours degree, I still had to sit in a lecture hall for two hours at a time, read complex textbooks while in agony, write essays when I couldn’t keep my eyes open, and still be expected to take part in the extra-curricular activities of the student experience, because I had to do these in order to be employable. Do you see the unfairness here? The academic world and the capitalist market combine, implicitly or explicitly, to make sure that disabled people are not granted entry to the higher echelons of success. It’s easy to look to the ‘success’ stories of people who have ‘overcome adversity’ and ‘inspired others in spite of their disabilities’. However, just remember why this is fundamentally problematic; it is designed to divert your anger to a place of sympathy, and to reassure your conscience that inaccessible systems and processes are morally permissible.

Fast forward to the current setting where I’ve been working for just over fifteen months. I’m fortunate enough to work in a place that is very accommodating and very understanding of what my disability means and what I need in order to make sure I can meet the demands of the job. But being a Sabbatical Officer isn’t plain sailing – far from it. Student Officers are virtually expected to be in all places, at all times, and still reply to that email in a matter of minutes. It is 24/7 and there is no down time. Every student who walks through your door commands the entirety of your attention and you must put a smile on your face for every campaign. The rewards of the job are more than I could ever articulate, but I shouldn’t have to apologise or justify why the demands of the job mean that something has to give. The life of a Sabbatical Officer is something which also needs to change nationally.

I am also repeatedly told that I have never had a ‘real job’. While I may fundamentally disagree with that analysis, let’s continue on the basis that I haven’t worked anywhere beyond the Students’ Union. When I move to a different job, I worry that nothing is going to change – the constant exhaustion, the lack of energy, the excruciating pain, and the permeating emotional and physical fatigue. Sure there’s the legal requirement for employers to make reasonable adjustments, but sometimes it is minimum standards which can actually do more harm than good. When I studied Employment Law at University, I came across a very interesting academic field of research whereby academics were analysing whether proactive or reactive reasonable adjustments were better. My initial viewpoint was to suggest that reactive was the better option; surely it made sense to implement reasonable adjustments which were individualised and specific to the needs and requirements of that person. It is person-centered and empowers them with the agency to vocalise what supports they need. Then, like any academic essay, I looked a little bit further and researched the opposite side of the argument. When proactive reasonable adjustments are put in place, it makes the workplace and society better for everyone.

Minimum standards can therefore be cloaked in an air of complacency, that the box has been ticked, and everyone is on a level playing field.

It made me think about this graphic, one which is very powerful at articulating the often varied struggles and barriers people face in order to fully participate in society. But even this cartoon is flawed; it suggests that with ‘Equity’ everything is fine, but ignores the fact that there are systemic injustices and inherent prejudices. In reality, the fence shouldn’t prevent anyone from seeing the game without assistances.

The attitude towards disabled people in work, particularly in this modern age, is sickening. There is an automatic distrust of people who say they are disabled and can either not work, or work with reduced hours. There is a paranoia that disabled people are ‘cheating the system’, using their ‘supposed’ conditions to their advantage, and put their feet up just to enjoy their time off. This never accounts for the fact that the number of people who are genuinely abusing welfare claims is tiny. No one ever mentions the fact that the number of tax evaders is hundreds and hundreds of times larger. No one ever mentions the fact that this distrust is ideologically driven. When those in power impose austerity, impose cuts to welfare via ‘reforms’, and cause people to die via degrading and humiliating ‘fit to work’ assessments, that is because a conscious decision has been taken to attack the most vulnerable in society. Often, it is those who have little power, influence, or a voice to challenge the status quo.

The Disable the Label Campaign is not just an awareness week; it’s not just a week of events and discussions; it’s a call for action and a rallying cry to mobilise and to support disabled people in their fight against struggle. But this isn’t individual struggle. Always remember that struggle is imposed by an oppressor, and always remember that oppressors can be defeated.

By Stephen McCrystall
President, Queen’s Students’ Union

It has been close to 5 years since I woke up in the morning without wincing in pain, but whether I like it or not, my chronic pain shapes my life and who I am. I suffer from endometriosis and polycystic ovarian syndrome (PCOS), which basically means I suffer from intense abdominal pain almost everyday. And if its that time of the month… well let’s just say agony is not even the word; more often than not I’d end up in A&E. To top that off, this year I have been diagnosed with an autoimmune disorder with a full diagnosis pending, but it has slowly affected my mobility and leaves me in quite a bit of pain as well. Hence, the past 2 years, have been a journey of acceptance and discovery, and learning to be comfortable with the word ‘disabled’.

I am an international student. This means I grew up in a very different culture with very different stigmas. To this day, I am unable to be completely open about my disabilities, even with my family members, due to the stigma surrounding invisible illnesses. Living in Belfast, far away from home, with this fear of telling someone I was in pain made me finally open up to the fact it was indeed a chronic illness and realise that it was ok to stop and take a back seat to listen to my body and its needs. You see, I was raised in a culture of ‘no excuses’; this meant I found it hard to ask for help when I needed it, but also meant that being in excruciating pain seemed like an ‘excuse’ to me. And so I would ignore my pain and press on, hurting myself more, both physically and mentally. It meant that in my head, I had no room to “label” myself ‘disabled’, because I could not accept that I was indeed disabled with an invisible illness. This cognitive dissonance of course did not help my already fragile mental health.

At this point I think it would be important for me to explain that along with my own internal struggle with accepting my chronic illness, and accepting that it was a disability, I had to fight for my illness to even be acknowledged by my doctors. The number of times I had been to my GP begging for pain relief to be told ‘it’s just period cramps’ –  even when I was not even on my period. My GP refused to believe my condition, even though I had a diagnosis from my doctors at home. They told me it was because of my weight and that the simple solution was to lose weight or go on birth control. Which by the way, trust me, I tried! I went on birth control and it only worsened the symptoms I experienced. I begged my GP for a referral, or even a scan, anything that would put me one step closer to receiving care for my condition. But I was consistently refused and eventually, I gave up. I relied on appointments with my doctors back at home over the summer and carried back medication to last the 10 months I’d be here in Belfast. However that would and could never work. With a chronic illness I need monitoring of my condition to see what worked and what didn’t, and without consistent follow-up, none of my medications would ever prove to be useful.

It took me 3 years of constant pain and struggling in university before I finally fought my battles with my GP and got a letter. I finally was able to ask for help. I was struggling with my degree and had reached a point I was completely unable to handle the stress, which then worsened my pain and severely limited my mobility.

It was only then that I learnt of the limitations that I faced as an international student, in applying for the help I needed as a disabled student.
 I hold a Tier 4-Student Visa, which denies me access to public funds. Hence I was not eligible to apply for either a Disability Living Allowance (now known as PIP) or a Disabled Students Allowance. A non Tier 4 international student, also can’t apply for the DLA/PIP/DSA as they are required to have a minimum of 3 years of residency in the UK.

I was also told that the University has discretion to only make the bare minimum “reasonable adjustments” (such as access to a green room venue for my exams, extra time for assignments, etc.), and unless I was able to fund the other support services I needed, such as having a note-taker for example, I would not be able to receive that support. I also learnt later that, the University often turns down support requests from international students, citing them as “not financially viable” or refers them to the Hardship Fund. The Hardship Fund is a very small pot of money in itself; any applications, if approved, usually amount to small hand-outs of around £200 – not at all a feasible source of payment for support services/equipment!

The very same International students who pay exorbitant sums of money ranging from £15,100- £35,900 (UG Fee rates for enrolment in the current academic year of 2017-18), being treated like cash cows by a university that denies them any access to support services, as they are “not financially viable” and gets away by providing the bare minimum “reasonable adjustments”. As an international student, I do not just feel angry and discriminated against, but appalled that a group of students can be side-lined in this way and that it can be completely ignored and structures accepted the way they stand.

The University, currently, and very recently, has created a support fund specifically for international students. This came about after much pushing for such a pot of money to be put in place for supporting the needs of a growing population of international students as QUB continues to expand and globalise. However, this has not been widely publicised to the international student community and so not many students are even aware that they may now be able to receive this fund. Yes, I said, may… it’s not very clear how big or small this pot of money is, if it is going to be sustained or if it is a one-off thing that will end when the money put aside runs out. In fact, I only learnt about this when I was asking Disability Services about the referral process for an international student, to fact-check what I was writing, to ensure it was not a gross misrepresentation, and not just a one-off experience.

So, as far as I am concerned – international students still have plenty of uncertainties about being disabled students in QUB. We come from various cultures and have so many different views on disability and being disabled. Many of us struggle with asking for help, even when we know it’s there, let alone asking for help that is not available or when we have no idea IF it even is available.

I love this university and I have had so many priceless experiences because I have come here to pursue my education, but it has been a hellish experience knowing an institution I pay so much to, and am so proud to be a part of, has essentially turned its back on me at a time I needed it the most, through its structures and lacking support services, engagement and communication.

Imagine someone took everything you could hear and then made the volume double. Then imagine whatever device they used wasn’t of great quality and what you hear now has lots of noise and crackling.

That’s what it’s like for me. I can hear more than most people around me – but that doesn’t make me any better at making sense of what I am hearing. In fact, I’m positively worse at it.

I’ve walked – usually very briskly (I’m late a lot) – to class via down the Malone Road from Elms Village every weekday during the semester for nearly three years now. It’s the same journey every day, and if you see me, you’ll probably notice I’m doing one of two things.

I’m either listening to my headphones, or talking to a friend.

These seem like pretty normal things, but for me, there’s a catch. I need to do these things.

I have Autism Spectrum Disorder and because of it, I have some prevalent quirks. I can tell you the birthdays of around 150 people from memory, I can tell you nearly anything you want to know about Elms Village and I taught myself to speak (fairly broken) Japanese.

However, my ASD also means I’m not great at filtering sensory information. This means I can very easily get overwhelmed by my environment and by the things my senses are telling me.

Different people with the condition will have different sensory issues. You’ll find some people who struggle with smells and others who have very low or high pain tolerance.

Personally, I struggle with noise. Ambient noise, loud noises, conflicting noises, high pitched noises, even silence; the list goes on.

So, when I am walking to class in the morning, I have to listen to music to block out the sound of cars as they pass by. For some reason, on the Malone Road, the sound of passing traffic is like a roar screaming in my ear and it’s unbearable. Talking to someone gives me something to concentrate on making it easier to filter the screeching out and listening to music through my headphones blocks out the sound to begin with.

The day the headphone jack in my phone stopped working; I quite literally had a mini breakdown. In fact, about 2 weeks later, I went on a day trip to Dublin. I was on my own in a place I didn’t know and my main coping mechanism was out of action. I began to freak out and got extremely agitated. I kept telling myself if I could make it to the restroom, I could calm down, get some privacy. Problems began to arise when I couldn’t even find any signage and even when I could, the toilets were pay to use. My head pounded, I couldn’t hear properly and everything started going black. Being in the middle of Dublin meant I didn’t know where I was and I wasn’t in a position to ask for help or explain to anyone what was wrong. So, I broke down in a corner on a staircase in St. Stephen’s Mall and started sobbing heavily. Not my most glamorous moment and not one I particularly want to relive anytime soon.

A woman – a complete stranger – came up to me, asked me if I was okay, and bought me a cup of tea. Honestly, I don’t know how long I would have been stuck there, but people like that woman help. People who ask what’s wrong, and don’t just point, stare, and mock make all the difference.

By Cat Rafferty
Disabled Students’ Officer, Queen’s Students’ Union

Living with an invisible disability is hard; dealing with one that flares up every month or so is pretty damn hard too. My pain rolls around and like half the population, I bleed, I’m cranky and occasionally, very occasionally, I might just shed a tear or two over an adorable video of a puppy. Unlike half the population, I struggle to stand up from my bed, I vomit and occasionally, very occasionally, I might just pass out. I have endometriosis, a condition whereby the release of the hormone that encourages the lining of the womb to shed doesn’t work quite as it should. Meaning that it tears, cramps and rips away from my uterine wall, mmm, delicious.

I’ve been known to take to some less than healthy coping mechanisms to deal with the pain, both physically and mentally, bed, inebriation, eating entire tubs of ice cream. Being in that much pain for that amount of time (it can be up to two weeks) can begin to turn even the sanest persons’ mental health upside down. Being far away from family at this time can be incredibly difficult because all I want is my mum and her chicken soup! And yet, on a day-to-day basis, it is invisible and not even regarded as a disability by the government, I am entitled to no benefits and there is no cure, outside of pain killers and a full hysterectomy, which they refuse to do on someone so young. There is no bonus to having endometriosis.

Some doctors advise having children, some tell you having children is an impossibility, if they are able to diagnose you at all. It takes the average woman seven years to be diagnosed with endometriosis; it took my mother ten and the only reason they have diagnosed me is that they have looked at my medical history and symptoms and decided I must just follow a similar plan, I have had ultrasounds and blood tests which have all returned pretty much as normal.

But this is not a rant about the NHS, god bless them, this is about awareness, so that when I bleed all over a chair during a lecture, I still feel proud for just getting to class, when I’m struggling to walk. This is about awareness, for the women who feel like there is something not quite right about their period, speak to someone. This is about awareness and fairness and the hope that people might see past a brave smile to be just a little kinder to each other, you never know what kind of battle someone is facing.

By Lydia Mealing

Yesterday was the International Day of Disabled Persons, and rather than celebrating the lives of disabled people, the news in Northern Ireland was focused on the changes to disability benefits known as Welfare Reform. The Northern Ireland Human Rights Commission and the Equality Commission for Northern Ireland released a joint statement on the “real hardship” the changes to the benefits systems are imposing on disabled people.

The statement said the reforms were contributing to higher levels of poverty among the disabled and both groups called for more mitigation measures to prevent “further harm”. Whilst this statement is welcoming, and more people need to be aware of the abhorrent actions from the government towards disabled people, I feel it is necessary to add some level of personalisation to the rhetoric surrounding welfare reform.

A few years ago, the government brought in a reform programme that included replacing Disability Living Allowance (DLA) with the Personal Independence Payment (PIP). Since last summer, disabled people started having to complete 50+ page application to PIP through answering extremely personal and upsetting questions on the limitations they face daily due to their disabilities. The major change from DLA is that your PIP allowance is determined by how many points you score. Yes, really, your struggles with your disabilities are now scored by the government, something that feels completely dehumanising and totally trivialises the pain you face daily.

Following on from completing this utterly draining form, you are contacted by the private firm Capita, where they want to send a ‘Disability Expert’ out to your house to assess you and your disabilities. I must emphasise that the title ‘Disability Expert’ is not a protected title, and those who do the assessments often do not know anything about the disabilities you may have yet they get to decide “how disabled you are” and how many points you get. The mental stress and embarrassment of these assessments can leave many disabled people worse off for months, if not years.

In addition, Capita have been facing many calls to be stripped of PIP contracts due to their conduct, with a Channel 4 documentary showing cases of assessors completing reports without even meeting the disabled person in question and admitting to completely dismissing what they are told by PIP claimants. Furthermore, there were many unethical problems with this firm and their conduct, as assessments were being rushed through due to financial incentives given to assessors, where they received £80 for the first eight assessments completed in a week and £160 for each assessment after that. Surely adequate time and sensitivity should be given to each claimant, rather than rushing through cases that can lead to devastating, life-changing outcomes for the disabled person in question.

To make matters worse, the situation for disabled people in NI is particularly dire, as 36% of DLA claimants in Northern Ireland had their benefits taken off them compared to 27% in Great Britain. The government hasn’t suggested in any way whatsoever how they plan to mitigate the impact this will have on disabled people and their families, and levels of poverty in Northern Ireland continue to grow further.

I am particularly angry about this situation as I had to go through this process myself from August 2016 – March 2017. This was the worst time of my life and the stress that was induced as a result made all of my conditions worse. I suffer from an auto-immune disease called psoriatic arthritis and have had this since I was 11 years old. My immune system attacks my bones, muscles and tendons and thinks that they are a disease. This started off in my knees and over time, has spread to every joint in my body and I am in immense pain daily. In addition, I have hypermobile joint syndrome, which can be easily described as being double-jointed, but when you have psoriatic arthritis, this means that even more of my joints are vulnerable and I frequently suffer from dislocated shoulders, as my tendons have been eroded to the point that they aren’t strong enough to keep the joint in place when it extends too far.

I also have fibromyalgia, a condition that causes wide-spread muscular and bone pain, extreme fatigue, digestive problems and sensory issues with light and sound. As with many people, when you have physical disabilities, they can lead to mental health issues and I have suffered on and off with depression and anxiety for many years. My mental health was at the worst it has ever been when I was going to the process of applying to PIP, as I felt so uncertain about my future every day and how a stranger what didn’t understand my conditions got to control my future independence.

When I finally submitted my PIP forms and scheduled my assessment, it was set for the day after I was discharged from hospital following getting steroid injections into both my shoulder joints. After steroid injections, you are supposed to be on bed rest for three days. The anxiety in the lead up to my procedures on my shoulders and my assessment the following day was unbearable, as I’d heard so many terrible stories about assessors lying about claimants’ disabilities.

My assessor seemed very nice when she was at my house and didn’t expect me to go through the physical tests and I had slings on both my arms, yet she still determined that my disabilities didn’t impact my life enough as I opened a book (yes – seriously), drove a manual car, and was completing a masters, therefore she believed I didn’t require support. I was honestly dumbfounded at this reasoning and wasn’t awarded enough points to keep my motability car and support that enabled me to attend university in the first place.

I went into a state of shock when this happened. I was so angry at the benefits system and had to work out how I was going to get out of my house every day without my car. I decided to run to be Queen’s Students’ Union’s Equality & Diversity Student Officer to try to get as far away from this hideous benefits system and to help other students who are like me. I tried walking to work, but the tendons in my ankles and feet are so weak and damaged that I got tendinitis in both ankles and was in excruciating pain daily. I’m now in a position that I get a taxi to work every day, try to get on with my campaigns through the pain and exhaustion and make as many people aware as possible of the horrible treatment of disabled people by the government.

My situation isn’t as bad as many others, who have ended up homeless as a result of welfare reform, and I am lucky that I have a voice to tell others of these laws and to campaign against them. However, many other disabled people aren’t in a position like mine, and it is time that we all come together and scream from the rooftops until everyone is aware of what the government’s austerity agenda is doing to disabled people. Welfare reform is making the lives of disabled people much worse, but we can come together and try to Disable the Label for them, as our welfare system us failing them.

By Rachel Powell, Student Officer Equality & Diversity.