Neil's blog posts

My experience of student services..

Jun

11

My experience of student support at the University of Sussex.

I thought that the last blog entry that I wrote didn’t include the support that I received from the Student support services at Sussex. So I thought I’d correct this, mention them, and hope that my positive experience with this invaluable department at the University helps others to maybe seek their support, and in doing so, will help their ‘student journey’. Or at least find some help in dealing with issues that may be restricting my fellow student’s experience of the University.

As you may be aware I was diagnosed with a serious mobility issue, something that I really did not expect or indeed anticipate, and this has made attending University difficult and challenging to say the least. I did manage earlier in the year to get a pass to park at the Bridge car park, which is twenty minutes away from the main University campus, It’s a pleasant walk up hill, when the sun is shining, but as my illness began to manifest itself and I found walking more and more difficult I really needed to find an alternative.

So I took myself to the office of Student Services, filled in the forms and made an appointment to see an advisor. Of course I had to take with me proof that I had this medical condition, (doctors notes and the like). During the course of my 45 minute interview a whole range of support was made available to me, even dispensing a parking permit for drivers with special needs. (I had at this time been for my DSS appointment in which I was interviewed regarding my disability and whether or not I was eligible for support from the state, but they don’t regard Avascular Necrosis as a serious condition, or a double hip replacement as warranting a temporary blue badge!) – So being able to park on campus, closer to the location of my lectures has been unbelievably helpful. The layout of the campus is, as I have mentioned before, Is not designed with disabled people in mind, and even with this helpful parking support, it is still incredibly difficult to get about.. I also cannot drive if I take pain relief, so it is a simple choice of a lectures, or pain relief, one or the other. So getting to the university is ok if I’m driving, but then my time on campus is limited until the pain takes over, and I’m unable to walk.

Other helpful support that I received from student support include a penalty waver for a week on essay submission, this helps if the medication creates a drug haze, and gives a little bit more time if my essay planning goes off course, just a small but helpful buffer.. And also library support..

You may, or may not have realised that the library is an access nightmare for anyone with mobility issues. Multiple floors and then there are issues of carrying books and using crutches, and even finding books, bending, reaching, stretching and navigating the shelves is a difficult process, and when coupled with basic access, It just make a trip to the library a nightmare. Access and navigation of the library becomes such an issue that you just cannot face the process, so it becomes such an issue, in the end it’s simpler just not to go. This impacts on a disabled students studies, how can one possibly research if access is limited? The ability to browse shelves, when taken away is a serious issue, how many books are lost to the student who can’t just stumble across the book  which could help that essay reach higher marks, and the student more clarity on issues that they wish to study? 

The Library services that are offered are a limited easier access, however the entrance is separate from the main entrance to the library, and the path to this second class entrance is along a longwinded path,  and invariably there are cars parked on the path impeding access.

But by far the best service offered to student with disabilities are the libraries members of staff. The Library offers an order and collection service, simply email the book you require, and it is waiting for you in a day or so, and the staff have been so very helpful in providing this service, sometimes offering to collect books without pre-ordering. This along with electronic renewal is by far the best service available. Thankfully we are in the digital age, and more and more books are being digitalised, and can be accessed online, this makes things easier for a disabled student, but what is lost is the experience of using a library, and its social aspect. 

 I am aware that the campus of the University was not designed for simple access, and I have heard that there are plans to improve access about the university, but only by reporting the issues that disabled student encounter every day, can we hopefully have some parity in our student experience, and enjoy a level playing field with other students across the academic spectrum.

I’d advise my fellow students to visit the student support services, all I can say is that they were so efficient, friendly and helpful, most of the services that were put in place, were put in place with a few days, and this radically improved my University experience.. and all it costs is a bit of your time..Well worth it! 

So if you see us string at the sky, or looking frustrated, maybe kindly offer to reach that book I might have my eye on! I’ll get you a coffee and we can talk.. 

HIV, study and me..(Oh and dodgy legs).

Jun

08

 

I’ve always believed that It’s best to start a relationship by telling the truth, by being open and honest about who we are. My name is Neil, and I’m a Gay man who was diagnosed with HIV on Wednesday the 21stof March 2012 at 14.30pm. I remember that date and time so well, as it was the date when everything changed for me. 

 If you are expecting me to say that on that date my world fell to pieces, and I failed to cope with the new situation that I unexpectedly found myself in then I’m sorry.. It didn’t play out that way.

 The journey from that date to this has been quite fraught with twists and turns, some that you would never expect, the story of my journey with HIV is not simple, and it’s certainly not smooth sailing as the leaflets imply that it is in this era of medication and management of the condition. But I’ll break all that into smaller parts, bite sized chunks that might just be manageable and easily digested. The story of getting here now is a rollercoaster of pills thrills and bellyaches, fight-songs and torch-songs, and boring, boring days.

  I’ve been a postgrad student at Sussex for nearly a year now, I’ve been studying Social and Political thought (part time). But I thought that I would share my experiences of HIV, Disability and my student journey online. This last year has not been the easiest for me due to ongoing medical issues, complications to my existing conditions, and problems with emerging disabilities. But I want to primarily write this blog to help show illness and disability no matter how debilitating should not bar you from your studies, and that with a little perseverance, motivation and determination you can continue and succeed, no matter how many difficulties life throws at you.

 In December 2017 I was diagnosed with Avascular necrosis, (also called osteonecrosis) this is the death of bone tissue on the Femur due to a lack of blood supply. It leads to tiny fractures and the death of the bone. Avascular necrosis is associated with HIVand its long-term medications, Sickle cell anaemia, Radiation therapy and the use of steroids. It is also suggested that Trauma and lifestylechoices such as excessive alcohol intake, smoking and a high cholesterol diet can also be contributing factors.

 As a result of diagnosis, it was decided that that I needed double hip replacement. The first of these hip replacements took place on the 5thMarch 2018. I entered hospital at 9am on the Monday, and was discharged on Wednesday afternoon 2½days later! I found the whole experience less painful than I thought, (or feared that it might have been).

 My second replacement is now booked in for the 25thof June 2018, And I am really looking forward to having the second hip replaced, knowing that it will deal with the excessive pain that I have been suffering.  

 As you may have realised (without thinking too much about it) the campus at Sussex is not designed for people who are unable to walk, granted there are (in certain places) a few slopes and easier accesses for wheelchair users, but if you are on crutches.. Then you suddenly find the campus almost inaccessible. Journeys are long winded, access to certain rooms such as the library entail a long walk around buildings to discreet side doors, back exits which cause pain and suffering, and pure agony, which leads to not wanting to attend seminars or events.

 When faced with a choice of a huge detour just to get to buildings that are essential to study, then disability becomes a major issue. This all on the year which is supposed to be all about ‘Access to study’. It’s  true that you never really know or notice about things unless you are in the position of experience, but I’ll challenge any member of the University management, Dean’s, Chancellors, Tutors or staff of the student support to spend a day in crutches and attempt to get about the campus for just one day..  I know this challenge won’t be taken up, I’ll just be given a list of email addresses to write to, and my correspondence will be lost amongst the piles of important suggestions and great observations. 

 So I’ll just limp on, but if you see me, please hold that door open! Thank you.