Adaptive Product Reviews: Wheelchair Edition (Salsa M2)

……….Wheelchair Services have offered my son a Salsa M electric wheelchair. How do you find this wheelchair, and what postural set-up do you use?

The parent of a boy with muscular dystrophy asking on a forum for young disabled people

I was given this wheelchair by wheelchair services, so I offered to write a comprehensive review of my experience with it to help this lad and his mother decide whether this wheelchair was appropriate for them.

When wheelchair services are giving you a wheelchair, it will often be one from the Quickie Salsa range. In the past I had a Jive M, which is the big brother of this chair, but my current chair is the Salsa M2.

Me, stretched out in my wheelchair. My feet are on the leg-rests on the left of the image an d my head is towards the top at the right. You can see me being strapped in using a 4 point harness, with my arms resting on channel armrests.
Using the tilt, recline, and leg raiser functions, I can be spread out in my chair almost as if I were lying down, which makes it easier and more comfortable to reposition.

The chair

In this range, M stands for ‘mid-wheel’ drive, and describes a chair that has its main drive wheels in the middle, rather than driving from the back. In general, a mid-wheel drive chair is smaller to turn and more useable indoors, while a rear-wheel drive chair has a lot more ability to climb kerbs and tackle obstacles.

I live in a part of London which is very flat, and has very good dropped kerbs, which means that I don’t need the power provided by the rear wheel drive as much, and I live in a flat, which means that I need the manoeuvrability provided by the mid-wheel drive. I haven’t had much trouble getting around with this chair in general, it does most dropped kerbs and most ramps happily, and will tackle a small bump without any real trouble. That said, when I do venture out of London, I really struggle to get the chair to climb more difficult kerbs or temperamental streets.

The range are very programmable, and in my area wheelchair services set a maximum speed at 4mph. I find this really frustrating because I used to love the ability (from my old chair) to go for a jog with the dog, or to run for a bus. This top speed is one of my two least favourite things about the chair – the other being the braking. The stopping distance from letting go of the controller to being at a standstill is far longer than it could safely be for me. I’m hoping to go back to wheelchair services for them to alter this, but I don’t get on well with it as it is.

Overall, it’s a manoeuvrable, nippy chair which adequately manages most of the challenges set in its way, but I struggle to be more positive about it than that. If it were slightly better at climbing kerbs, slightly faster, and had slightly better braking I would be far happier with it – but then it would be the Jive M anyway!

The controller

The centre of the image is a mushroom shaped joystick. Above it is a black screen, switched off. Below the wheelchair joystick is some black foam and a black bag.
The mushroom-head joystick and LCD display of my RNET controller

I’m not sure whether the braking delay is an issue with the chair, or whether it actually comes from the controller.  The chair has the R-NET controller with a LCD display, and I’ve noticed it’s a lot less rapid in its responses than my previous chair was. It takes a frustratingly long time to boot from being switched off also. Once I’m using it though, it’s really good. It has 5 profiles, each one with 5 different speed levels within it, which allows you to use one profile indoors and another outdoors, and know that your maximum speed will be appropriately set. I think I’d benefit from this more on an 8mph chair though, as in practice I always have it set to the maximum speed anyway. The controller also allows me to alter the position of the backrest, tilt angle, and leg rests by cycling through the options. It also shows me the time (saves me checking my watch and appearing rude), my speed, and how far I’ve travelled since I last reset the trip counter, which is fascinating.

With the controller I have a mushroom joystick. This is designed to meet my hand where it’s at and allow me to drive the chair with my hand resting on the joystick, without having to manage a grip, which is great for me.

The other good thing about the RNET controller is that it’s very future-proof. If my needs change in future, it’s easy to swap in other joysticks and microjoysticks depending on what my needs are at the time.

The legrests

A black legrest extends from the wheelchair up the photo, with the footrest at the top and a black calf-pad underneath it.
This shows the padded knee rest, the padded calf rest, and the ankle huggers to which my feet are typically tied while I drive along.,
A leg stretched out on a black wheelchair legrest
This shows my leg on the legrest. You can see the shape of the legrest more clearly here, although the ankle-hugger is not done up around my foot as I was in a hurry.

I have the powered leg rests, which are controlled from the screen/joystick. I have the standard individual footplates, then calf supports and pads at the outside of my knees, which helps to keep my legs in alignment. The calf supports are slightly padded. On the footplates I have ankle-huggers, which clip my feet in at the ankle and again keep me aligned. The leg-rests have a quick-release swing-away function, which allows you to bring the chair far closer to a toilet, or for transferring (if you’re not hoisted). With this, they swing right out to the sides, allowing you to get the body of the chair as near to where you want to be as possible, without the legrests being in the way.

The footplates twist very easily, such that bumping into things slowly changes the angle to point the footplates further and further upwards, until your feet are at ridiculous angles and they start to catch on the ground and on kerbs. It’s really important to reset the angle of the footplate regularly, and to make sure those alan keys are completely tight.

The actuators on the leg rests seem pretty resilient. One of the leg rests got damaged by a door which bent it slightly and made it not work as well as it had been – it stops at a slightly lower height than it really should. Despite this, it still works, which I’m impressed by.

The cushion

The seat of my wheelchair - a black cushion which is heavily dented to provide posture support. The base of my backrest is visible, as are the tops of my legrests.
The seat of my chair, against the backrest

The cushion I have is the Jay 2 deep contour cushion. I asked for a cushion that would support my pelvis at the hips because my posture tends to twist where there’s the least resistance due to muscle weakness. I was very sceptical of the cushion they gave me because it didn’t seem to offer that, but actually it’s great. It’s a very deep-channelled cushion where my legs are guided into separate trajectories, with me seated on gel. It was a difficult decision whether to go for that, or for air (which is better for pressure but worse for pain and discomfort) and we eventually decided on this cushion.

From the photo, you can see the shape of the cushion, which is designed to support my pelvis in perfect alignment and I get on surprisingly well with it. It supports and cradles my pelvis and hips, which has become increasingly important as I’ve struggled increasingly with weight loss, and it feels like it provides adequate pressure protection. While the image shows the cushion looking very creased and in need of smoothing over, it is possible to see the deep channels in the cushion that hold my legs at the right angle.

The backrest

The backrest of my electric wheelchair, with bits sticking out which contour round my torso to support it better
The backrest of my chair, with curved round lateral supports built into the backrest

I have the Jay 3 deep contour backrest with mid-lateral supports. Previously I’ve had laterals as an attachment, whereas this has them built into the back. This makes it a lot less supportive than if it had separate laterals, but the separate ones dug into my back very badly at the base, and were causing nerve compression. This backrest doesn’t dig in as far as the other laterals did, but is less supportive as a result. The technicians also placed a lot of rolls and chunks of foam between the backrest and the backrest cover to make my chair more supportive. Not having full laterals would make the chair pretty unuseable if not for the harness and seatbelt, but with the harness and seatbelt it works really well.

The image shows my upper body in a blue jumper, with a 4 point black harness over me, securing me at the shoulders and hips. My feeding tube is dangling.
An incredibly unflattering photo of my midriff in the black chest harness. Under my jumper round my waist is a money bag of dog treats making me appear a funny shape! Regardless, this is how the harness works to hold me in place, though it is on a bit skewed in this image, and isn’t equally tight on both sides.

The seatbelt is padded, and is designed to hold my pelvis back in the chair. As I have a suprapubic catheter this causes problems for me, because it puts pressure on that area. Despite that, it’s very necessary, so I’ve learned to get used to it. The harness is slightly elasticated and clips down at four points – shoulders and above my hips. This really works for me in terms of holding me in position comfortably, but the issue I have with it is its lack of adjustability. The points at the shoulders can be easily adjusted, but not the ones above my hips. A harness set to work for me when I’m in my winter coat is no good in a t-shirt. I’ve tried to find a compromise length for the straps, but it’s non-ideal.

The headrest

The headrest I have is the standard Jay contoured cradle headrest, but I’ve had a lot of trouble with it, it’s been the peskiest part of the chair for me. I spend a lot of time with the chair tilted and reclined a bit, and the setup I was left with after wheelchair services meant that I was staring at the ceiling a lot of the time. I’ve flipped the swan-neck pole on the headrest round in order to have the headrest a lot further forward than it appears to be designed to be. People around me say that I’ve got the headrest in a position that looks abnormal, but for me it allows me to see where I’m driving, which is essential!

I’m hoping to be seen at wheelchair services again soon, and one of the key issues I’ll raise is about what they can do about headrests that are more supportive than this one but also are better positioned to hold my head at a driving angle.

The armrests

A black armrest for the wheelchair, which is demonstrably a deep channel, with a ridged pad at the far end to support the elbow and a large spread out area for supporting the palm of the hand,
The Otto Bock armrests, which provide a deep channel for supporting the arm to allow me to maximise use of my forearms
My arm in a blue jumper, with my hand spread out on a black pad.
My hand spread out on the armrest and palmrest from the photo above

The armrests I have are amazing. They’re made by Otto Bock and they’re channelled armrests, in  which my arms lie in a padded halfpipe. I have a lot more use of my arms with the elbows supported, and I find that the armrests support my elbows, giving me the use of my forearms without having to use an uncomfortable wheelchair table. These armrests are very broad, especially with the left-hand side where I’ve got a spread out pad to support the whole of my left hand. What saves these armrests is that they’re mounted on a system that runs round the back of the chair and allows the armrests to be pushed in. This makes getting around my house possible, as it stops the chair being too wide for standard doors.

The armrests also flip up and away, making them far better for things like catheter changes where the nurses need access to the suprapubic catheter set into my abdomen.

The only annoying armrest thing is that the pad for the right had didn’t fit with the joystick so they left it bare metal. I cut a piece of foam to put there to protect my hand from touching frozen or hot metal, and that seems to have worked fine where placed.

The positioning

My positioning in this chair can be altered through three elements, leg reststilt-in-space, and backrests (four if you count each leg rest separately).

Recline

The electric wheelchair parked in front of a bookshelf, with the backrest completely upright
The chair back fully upright
The same electric wheelchair in the same place, but with the backrest completely reclined
The chair back fully reclined

The backrest recline function tips the backrest back and forward relative to the chair. This helps you lean forward (useful if you’re lucky enough to be able to stand) and back, which changes the angle you’re sat at. I usually drive sat leaning back quite a long way, which is why I brought the headrest so aggressively far forward. This recline is also really helpful for repositioning me and altering where my bodyweight is in the chair. I struggle with dizziness if I’m sat up for very long periods, so really benefit from the recline function.

Tllt

The same electric wheelchair in the same place completely upright
The chair fully upright
The same electric wheelchair in the same place tilted as far back on its axis as it will go
The chair fully tilted back on its axis

The tilt function tips the whole chair back on its axis. The angle of backrest to body to legs remains the same, but I’m tilted further back. The degree of tilt on the chair is more than I can safely use, but the tilt is crucial to me repositioning regularly while in the chair, so I wouldn’t be able to spend long periods in it without the tilt.

This also means that while the recline doesn’t actually look like it reclines that far, once you combine that with the tilt, you can be practically horizontal without leaving the char.

Leg-rests

The wheelchair with the leg rests completely tucked in and vertical to the floor
Leg-rests fully brought in
The same electric wheelchair in the same place with the legrests extended as far as possible
Leg-rests fully extended

The leg-rests have motors in to raise them up so your legs aren’t always hanging directly below you, which can be really bad for some conditions and for healing wounds. They’re also really important generally for helping reposition and change where weight was bearing on the person’s skin (especially if worried about sores). I had hoped they’d bring the legs up to flat, but they don’t, so if I need my legs flat in front of me I use a chunk of foam on top of the raised leg-rests. The actuators on the leg rests seem pretty resilient. One of the leg rests got damaged by a door which bent it slightly and made it not work as well as it had been – it stops at a slightly lower height than it really should. Despite this, it still works, which I’m impressed by. The trouble with the leg-rests being up, I find, is how hard they make steering. If you’re trying to drive your chair round tight corners, be warned, your legs may gouge out chunks of those corners.

Conclusion

As far as wheelchair services chairs go, this is a pretty good one, and the postural support on it can always be altered and improved to meet me whatever my needs are. I wish it was a faster chair with better braking, and I wish that it was better with kerbs, but overall I’m happy with it, and would probably recommend it to other wheelchair users.

What have you found useful in wheelchair positioning? Do you have any recommendations for things I missed?

If you have any questions about these, or any other product, (or have recommendations of your own) just comment, email me at hale.jamie.r@gmail.com, or tweet @jamierhale

To see the other reviews in this series, go to Adaptive Product Reviews

If you make or sell a product you want me to review, drop me an email on hale.jamie.r@gmail.com

Disabled at Uni: 5. Starting to study

The image shows six signs in different colours against a blue background. They say "help", "assistance", "support", "tips", "guidance", and "advice"

Last week I discussed getting accommodation and your health and social care set up, and this week I’m discussing being ready for the academic year, and starting to study.

I’m always quite nervous when term starts – even after I spent 5 years on my undergraduate degree, starting my Master’s was terrifying. I love being part of an intellectual community, but starting Uni can be quite an intimidating experience.

Academic preparation

If you can get access to reading lists in advance, it’s worth doing this, and spending the summer preparing notes. At the beginning of term there’s often a lot of logistics involved in starting study – especially as a disabled student – and having some of the reading out of the way is often helpful. Especially if you’re reading far ahead of the start of the course, it’s worth taking comprehensive notes – what did you think was important? what did you agree or disagree with? why? If you have trouble finding a reading list, contact the course convener and explain you’re starting in September and is there any summer reading they’d recommend.

Clubs and societies

Most Unis will have a Freshers Fayre, where all the student clubs and societies put out a table and try to convince you to sign up. These are often very crowded and loud – but a lot of Unis will let disabled students in half an hour ahead of other students – if they don’t advertise doing this, get in touch and ask – at the least they should let you jump the queue. The Freshers Fayre is a chance for you to see what’s on offer, and sign up to society mailing lists, so it’s very much worth going to. If loud, crowded spaces aren’t for you, you can also go to the Students’ Union website and look through the clubs and societies, then ‘like’ the ones you’re interested in on Facebook. That allows you to scan through what’s on offer in your own time, rather than in Fresher’s Fayre.

I try to choose one society each year, and try to join and commit to it – which gives me enough time to balance this with my studies – but lots of people do more than one – you’ll know what works best for you. If you’re new to the institution, try out lots of different societies – go to the introductory socials and try and meet lots of people. Where I did my Undergraduate, basically everywhere was accessible, but where I’m doing my Master’s lots of campus and the surrounding area isn’t. If you need wheelchair access, it might be worth contacting the societies in advance to check whether they’re using an accessible venue. If they’re not, they might be able to change venue if given enough time, so don’t be afraid to press them on this (but if they refuse, they’re clearly not worth your time).

Making friends

If you’re not living with other students, it’s well worth spending as much time as possible on campus in the first week or two of classes. Strike up conversations and get to know people (make sure your Facebook is set to findable, so new friends can add you easily). I really struggled with the rigidity of my care rotas and the fact that things were often happening very last minute, meaning I couldn’t go. If this is something you’re likely to struggle with, try and juggle things so that you have some extra care at the start of term, to maximise your spontaneity.

People are going to come up and talk to you, so it’s worth having a few questions, hobbies, and topics of conversation lined up. I know I sometimes freeze when meeting new people – it’s always reasonable to ask people what they’re studying, or why they chose this Uni. You probably won’t meet your best friends immediately on arriving at Uni, but you will make friends, and it’s worth really trying to do so. Especially if you’re at events where people are drunk, and your impairment is visible, there’s a reasonably high chance you’ll get personal questions. Decide how much you’re willing to say in advance, and have a couple of deflecting statements – “my health’s the most boring thing about me! Hey – where did you get your shirt, it’s great” or “oh – you should have seen the tiger – it definitely came off worst” are my standard ones. I know I will always be Wheelchair Jamie, but I like to make sure my friendships start out with a focus on my interests and hobbies, not just on my disability.

Access

Your University might be compressed onto a campus, or spread out in a city. It might be completely accessible or very inaccessible. Regardless, it will take you some time to find your way around it. Once you’re a student, it’s worth taking some time to explore and mentally earmark useful accessible routes, lifts, and shortcuts. The Uni should have an accessible campus map, but I’ve found that it isn’t always accurate for me, because lifts have size and weight limits, or it requires narrow corridors. Make your own notes on how to get around campus. If you know where you will have classes, scope the area out in advance, so you’re not getting lost when you’re in a hurry.

If you run into any problems with access or your needs being met, raise them with the Uni as soon as they occur, so that progress can be made on solving them right at the start of term. I went to my first class in a building without safe wheelchair access, and straight away contacted disability services, who started on developing a solution. Don’t sit on problems, upset or miserable – there is often a solution, and there are people out there to help.

Emotional support

If you find yourself struggling emotionally or practically with the demands of the course, or life on campus, contact disability services and your personal tutor. A lot of universities offer some student mentoring or counselling – don’t suffer in silence.

When I started Uni this autumn, I started to feel very low almost immediately. The campus I am studying at isn’t fully accessible, I’d wanted to go to a talk, and contacted them just to check I’d be able to attend it. I got a reply that said I couldn’t – and offered no solution – just a no. This really made me feel like I was studying at a Uni that didn’t want people like me there, but I discussed this with my personal adviser. He said he’d do anything he could to help, and to copy him in on any problems I was having, which immediately made me feel a bit better.

Disabled Students’ Networks are often useful. I got in touch with another wheelchair user on campus, which made me feel a lot less isolated, for not being the only one. Other disabled allies – especially people who’ve been there longer than you – are really helpful. They’ll know how to get things sorted, and be full of lots of useful advice, so use them if you get the chance.

If you have any thoughts, questions or comments, leave a comment here, email me on hale.jamie.r@gmail.com, or tweet me @jamierhale

This has been the last post in the first planned series – what do you want to know about next? There will be upcoming posts about using PAs at uni, and about adaptive software and equipment – what else would you like to see?

The ‘disabled at uni’ series

  1. Applying to study
  2. Disabled Students’ Allowance
  3. Before your course begins (and who’s there to help)
  4. Accommodation, social care, and health care
  5. Starting to study

Adaptive Product Reviews: Office Edition (Accuratus keyboard, Evoluent mouse, Ergorest arm supports)

……….I’m thinking about applying to University, but I struggle to sit at a computer or type. What equipment is out there to make this easier?

A question I was asked at a conference

Sometimes on this blog I review equipment designed for disabled people, e.g. my wheelchair reviews. However, what I really enjoy is highlighting equipment on general sale, that I benefited from as a disabled person, and that others might not know about.

When I went back to University to do my Master’s, I was a lot less able to sit at a desk and work than I had been when I finished me Undergraduate degree. While I can use voice dictation software, I struggle with this, especially when it comes to editing work. This meant that I needed an equipment setup that would let me work. While I received this equipment through Disabled Students’ Allowance, it is all available to purchase, and none of it was explicitly designed for disabled people.

I also received a computer, height adjustable desk, and height adjustable over-the-bed table, but this review focuses on the smaller pieces of equipment I received.

They were all really helpful, and I’m glad to have received them.

Accuratus keyboard

Keyboard

I was told I would be receiving a mini keyboard, and when this Accuratus keyboard was delivered for me, I did not believe at first that it was the mini keyboard I had been promised.

Once you allow for the tracker ball on the and taking up a considerable amount of space, then the sizing on this keyboard becomes more reasonable however I still would not describe it as really, and I do find that it requires both hands, I cannot get enough reach using just one hand, which disappointed me. It is mini because it doesn’t have number keys, not because the keys it has are smaller.

I had also hoped that the keys would be easier to press than they turned out to be. While the keyboard is light touch, I had been hoping for something easier than the Surfacebook Pro keyboard is. In fact this keyboard is notably harder. Its main advantage is the trackball. This allows me to very easily move the mouse around the screen, and works well in conjunction with the aforementioned Evoluent mouse.

I do find myself using this keyboard a bit but it isn’t what I would overall dream of.  My ideal computer setup would probably involve a keyboard I could use easily one handed, with chorded typing, and a series of buttons and switches for mouse functions. However we rarely get our dreams.

Ergorest forearm supports

Mobile arm supports

I didn’t have high hopes for these, as I couldn’t see what they would do for me. I usually work from my bed, and I fundamentally didn’t understand the point of these forearm rests, especially when not using a desk. Or at least I didn’t understand the point until I started using them – and now I always use a desk in order to use them. I have trouble holding my arms and fingers over a keyboard for any length of time, and this massively impedes any typing I might try and do.

The Ergorest forearm support allows my hands to glide across the keyboard with minimal input from me. It only takes a small motion and relies far less on muscle strength. They clamp to a desk surface and you can easily set the height on them by twisting a screw. They substituted for an ability to stretch easily over the keyboard in a way I found very useful.

These have become essential to me and I am now looking at whether there is a way I could mount them on my wheelchair, so they can support me in using my arms in a day to day manner. I have benefited from them enormously and recommend them to everyone.

Evoluent vertical mouse 4

Evoluent vertical mouse

In contrast, I had high hopes for this mouse. This was because it is not just a mouse, it’s a programmable multifunction device! As a mouse, it can be incredibly sensitive to the slightest movement, and it has six programmable buttons.

This means I can program functions such as undo, redo, cut, copy, and paste to respond to touches of a single button on the mouse. Having this capacity is really useful, and the mouse can also be trained for use with different programs. If I want buttons to function differently in a word document and a browser, all I have to do to is change the button press associated with that function. The mouse even allows me to program different functions again if two buttons are pressed at the same time. It feels like the mouse is almost too clever for me, I haven’t yet gotten used to using all the functions on it let alone memorising all of the buttons, but I’m getting there.

I almost wished this mouse was simpler, but one huge advantage it has is that it can be used alongside a different mouse. I quite often do this with my keyboard, where I use the tracker ball to move the mouse around the window and then the buttons on the Evoluent mouse.

I am very grateful for having had the experience of trying out all of these different types of input device, in an effort to find something which works ideally. Overall if I was recommending one product, it would be the Ergorest armrests or the Evoluent mouse as I ultimately found that the Accuratus keyboard was not everything I had hoped for. However, if you are slightly better than me with keyboards that are slightly stiffer, you might have a different experience with it.

What adaptive (or non-adaptive) office equipment have you found most useful? 

If you have any questions about these, or any other product, (or have recommendations of your own) just email me at hale.jamie.r@gmail.com, or tweet @jamierhale

To see the other reviews in this series, go to Adaptive Product Reviews

If you make or sell a product you want me to review, drop me an email on hale.jamie.r@gmail.com

Disabled at Uni: 4. Accommodation, social care, and health care

An image of a hand holding a torn piece of paper, with handwritten "home is where the [heart] is". Instead of the word "heart" is a coloured in image of a heart.

Last week, I wrote about the support services in place at the University, and how to get set up with them. This week, I’m discussing health and social care, hiring Personal Assistants, and accommodation at University.

One of my key pieces of advice for disabled students about to go to University is that it’s really worth living in halls if you have the opportunity. I did this in my undergraduate, but with my Master’s I stayed living in my flat. It’s far less common for postgraduates to live in halls than undergraduates, but some do.

University is full of social opportunities, student clubs and societies, nights out, and new friendships. The more time you’re able to spend on campus, the more you can benefit from this. If you’re living further away, it’s easy to become quite detached from what’s going on at University.

Unis usually have some halls that are adapted for wheelchair users. Mine didn’t have any with ceiling track hoists but had plenty with larger adapted bathrooms and Closomat toilets (which wash and blow dry you at the touch of a button). Mine also had an adapted kitchen with space under the sink and hobs to get my legs, and a washing machine (other flats in the same halls had to go to a communal laundry room). If you’ve got more complicated needs that go beyond a standard adapted room, it’s still worth contacting the accommodation team, as they may have something that meets your needs – you’ll only know if you ask.

Typically, if you’re funded by social services for your social care, your original Local Authority retain responsibility for your care while you’re at Uni. If this is your first time living away from home, you may not know exactly what care you need in advance. It might be worth spending a week writing down every task you needed help with and exactly how long it took and what needed doing. That diary can then be given to your LA (or NHS body if your care is funded by Continuing Healthcare) to help establish what care support you might need. If your care is funded by Continuing Healthcare, who retains responsibility for funding it may be more complex – but discuss it with your assessors as early as possible.

I usually hire people without care experience, and had a lot of luck advertising at my Uni and hiring fellow students. It did mean that I had to train people myself, but worked well for giving me what I needed. I would say make sure not to hire anyone on your course – that can be uncomfortable – I really struggled when I had someone hired and we ended up in the same module. I wanted to be taken seriously by my classmates, and didn’t feel comfortable with other students on the course knowing my care needs. Universities often have job sites, or facebook pages for advertising student jobs, and that’s where I’ve found people successfully in the past.

One thing that’s worth thinking about is where you want your doctor to be based. There is often a surgery on or affiliated with your campus, so you can move your registration there during term-time, and return to your home GP in the holidays. There are advantages to this, in that your GP is au fait with how the University prefer to support students – if you need to fill in a special extenuating circumstances form, for example, then they’re likely to know how to that.

However, if you have referrals pending to other clinics, changing your GP in the middle of the process can get in the way of those referrals. Similarly if you’ve got a lot of health conditions, there are also advantages to remaining with a GP who knows your needs. It’s worth discussing this with your GP before you go to University, so you can take their advice. It might also be worth contacting the Health Centre at your new University to discuss your situation and needs, as they might also be able to advise you on whether to change or not.

Some Universities do a pre-course orientation for disabled students, or allow disabled students to move into Halls ahead of the rest of the campus community. If these things are on offer, then it’s well worth taking them up on the opportunities. Navigating a new Uni can be a challenging thing, especially if you have mobility impairments, so that bit of extra time to become familiar with it is worth taking. If they don’t offer this formally, contact disability services and ask whether there’s anything they can do for you specifically. They might well be able to give you a campus tour, or similar. In my final year, I rented my room for an extra week, so that I could move in early and get set up in my own time. This also meant I could sort out minor problems that arose, and meet with professors before the chaos of Fresher’s week began.

If you decide to stay living at home, or away from the Uni, then it’s worth trying to get things in place for you to be able to spend quite a bit of time on campus. Whether that means getting your driving license, applying for more care, or identifying late night public transport routes, if you want to make friends at Uni it’s worth doing interesting things – which often happen in the evening.

Next week, I will discuss starting to study, and being prepared for the academics in your course.

If you have any thoughts, questions or comments, leave a comment here, email me on hale.jamie.r@gmail.com, or tweet me @jamierhale

The ‘disabled at uni’ series

  1. Applying to study
  2. Disabled Students’ Allowance
  3. Before your course begins (and who’s there to help)
  4. Accommodation, social care, and health care
  5. Starting to study

Future as Celebration: Transpose @ the Barbican

In a world that feels bleak, it is important not to accustom ourselves to living without the hope that we can build a better future.

At Transpose: The Future (Barbican Centre, 6th-8th Dec), a collection of trans artists come together to explore how this could be done, through mediums ranging from opera to electronica and poetry.

Tickets from £5 (conc) to £15 (standard).

The past year has seemed rather short on celebrations – the rising strength of the far right, the threat of Brexit, a dark cloud seems to hang over much of the political world. As an artist I feel a moral imperative to create – to tell my story, to hear our stories, to reach out internationally and build a true sense of solidarity. I want to do this work, because this is a time in which marginalised people should build communities. It is important that we have each other’s backs while we’re fighting what feels like a rising tide of intolerance, from the racism fuelled by the Brexit vote to the disablism enforced alongside austerity.

The disabled community knows well that telling long tales of our suffering – whilst palatable to a non-disabled world – fits into a narrative in which our primary emergency arises from afflicted bodies, rather than the structures of society. We have learned that enabled people thrive off our narratives of torment and overcoming, just as the simple ‘before and after’ narrative of transition fits with what cis society expects of trans people.

In times like this, celebration is a form of community-building. Giving in to the darkness and replicating those narratives of suffering uncritically and ceaselessly tends towards the overindulgent. When things seem bleak and our lives feel hard, we should celebrate the communities we have, the alliances we’ve built. We should celebrate our talents, our morals, our survival; we should bring our whole selves to that celebration, with rage and fury and beauty and joy. We should look to the future. What world do we want to have built – and what can we do in the present to build that world?

Transpose, at the Barbican on the 6th-8th of November, does this. Performers including CN Lester, myself, Robin Gurney, Rebekah Ubuntu, Holden Madagame and others cross boundaries from electronica to poetry and opera. We reject the simplicity of narratives defined by suffering, and refuse to allow ourselves to lose the future. Instead, we come together to celebrate the beauty, the survival, and the importance of hoping and dreaming our way to a better world.

Standard tickets are £15, with concessions from £5. All performances are BSL interpreted. There is full wheelchair access, with a Changing Places toilet in a different part of the venue.

Disabled at Uni: 3. Before your course begins (and who’s there to help)

A black keyboard with a black trackerball at the far right end

Last week, I wrote about Disabled Students’ Allowance and getting the right technology and support in place. This week, it’s more about setting up with the services the University offers, and how to give them what they need to help you.

You may already be in contact with staff at the University if you had questions for them while applying, but if not, it’s worth introducing yourself formally to some key people, so that they’re able to support you if you need that. I suggest sending them an introductory email about you, your interests, your impairments, and the support you might need, attaching your DSA needs report. The more support you’re likely to need, the more crucial this is, as it prepares them to be there for you in advance.

Disability services

Disability services are there to support disabled students throughout their degrees. If you were awarded any study skills or mentoring support, this may be provided by disability services, or may be provided by an outside contractor. Even if you don’t have that support formally, disability services will usually be the people who help with special arrangements for class (like wheelchair access) or exams (like the use of your dictation software). If you have any problems like inappropriate classrooms, lecturers not giving you materials in the right format, or difficulties with an assessment, disability services will be there to support you. They are always overloaded with new students at the start of term, so will appreciate you getting in touch well in advance to discuss your needs.

Examples

  • Disability services helped organise a system where the librarian would collect the books I wanted to borrow, and then my carer could go to the library and get them
  • Disability services ordered a hoist to put in a toilet so I could use the toilet on campus

Course convener

The person who convenes (organises) your course from an academic perspective will be a very useful ally. If they know who you are and what support you’re likely to need, they can take it into account when planning the course. They’re also able to make recommendations about what modules would work best for you, and which seminar groups (they’ll know who the most supportive seminar leaders are, for example).

Examples

  • In my Undergraduate, the course convenor organised it so that she was my personal tutor, as she knew the course inside out and was therefore best placed to support me
  • When my attendance dropped below the minimum required to pass a module, the course convener met with me and told me not to worry, and she’d sort it out for me.

Departmental administrator

The most important ally usually is your departmental administrator. They’re responsible for all the non-academic admin, and will typically be the person to lay out your timetable, assign you to rooms and seminar groups, take your essays when you hand them in, and deal with the paperwork of any extenuating/mitigating circumstances process.

Examples

  • When my seminar was moved to a room that was ‘wheelchair accessible’ but required a very sharp turn at the top of a flight of stairs, the departmental administrator contacted timetabling to organise for the seminar to be moved
  • When I needed my timetable well in advance to organise my care rota to suit it, the departmental administrator organised for me to be sent the draft timetable ahead of its release

Lecturers

Once you have your timetable, it’s worth also contacting all your lecturers in advance. I tend to send them an email that begins with how much I’m looking forward to their module (and giving a reason), then goes on to introduce myself. I sketch a brief overview of my impairment and how it’ll affect me, taking into consideration the way the course is taught (small seminars? big lectures?) and examined (group work? essays? exams?). I also warn them ahead of time that I might struggle with attendance at times.

Examples:

  • A lecturer arranged for a classmate to send me their notes on days where I missed class, so that I didn’t fall behind when I was ill
  • Because I told a lecturer I struggled with group work in my undergraduate, they allowed me to do group projects on my own, rather than having to work with other students.

Personal tutor

A personal tutor has pastoral responsibility for you. This means that if you’re having any problems, you can go to them and they will help support you and signpost you to whatever support service is best placed to meet your needs. You’re usually assigned them at the beginning of term, and they remain your personal tutor for the academic year. I tend to send them a bit more of an in-depth introduction, explaining what my impairment is, how it affects me, and any additional support I need. If you have any problems, it is your personal tutor who takes responsibility for shepherding you through the problems and having your back.

Examples:

  • I told my personal tutor I was struggling emotionally with being at a university where I felt so unwanted for being a wheelchair user, as campus was so inaccessible. He asked me to complain every time I faced a problem and to always copy him in on the emails, in case there was anything he could do
  • I don’t have as much social care as I need, so can’t attend campus to study as much as I would want. My personal tutor is writing a letter for my funding body explaining why I need more care

Counselling

Once term starts, you will have access to the University counselling services. They’re not primarily there to support people with enduring mental illness, their role is more to help students manage more common emotional issues, from exam anxiety to homesickness. You can usually refer yourself to counselling, and they often offer a limited number of sessions.

Examples:

  • I was very worried about my upcoming exams in final year, so I saw counselling, who talked me through making sure my exam arrangements were all set up, and helped me with techniques to manage my anxiety
  • In my final year I was very unhappy because I felt isolated, so I spoke to counselling, who helped me with some ideas of how to make friends at University, which made me feel a lot better

Mentor (DSA)

If your Disabled Students’ Allowance approved a mentor for you (usually for students with significant mental or physical health problems, or autistic spectrum disorders), then they’re something in between counselling and study skills. Their role is to help you manage the ecosystem around your studying, talking through life problems affecting your work, or helping you plan your week to get everything done.

Examples

  • I was very stressed because I had a busy week and a lot of reading, so my mentor supported me to calm down and schedule my work properly, including enough breaks to help me concentrate
  • I knew that I was running late with a piece of work, so my mentor contacted my course tutor to explain that I was under a lot of pressure outside Uni but that I was working on the piece and would hand it in a few days late

Study skills (DSA)

If your DSA funding awarded you study skills support, usually for students with a specific learning difficulty, then you might be wondering how they can help you. The line is that they are allowed to support you in learning strategies, but not do your work for you. Many study skills tutors take a holistic view of the field, and help you manage pressures from outside that are affecting your work, as well as the work itself.

Examples

  • I struggle to type and was looking for predictive text software to finish words for me, but couldn’t work out what I needed. My study skills tutor helped me find and trial predictive text software to help me write my essays
  • Predictive text software often inserts mistakes into your work and I struggle with proof-reading my work, as I see what I intended to write, not what was written. My study skills tutor helps me identify my errors so I can correct them.

As you can see, there are lots of people at University who are well placed to support you, and it’s to your advantage to contact them as early as possible. This way they’re more likely to remember you, and to make sure everything is arranged ahead of your course. It seems like a lot of work contacting everyone in advance, but in my experience it will do you a lot of favours later on.

In the next part, I will talk about halls and accommodation, as well as getting everything in place with your health and social care

If you have any thoughts, questions or comments, leave a comment here, email me on hale.jamie.r@gmail.com, or tweet me @jamierhale

The ‘disabled at uni’ series

  1. Applying to study
  2. Disabled Students’ Allowance
  3. Before your course begins (and who’s there to help)
  4. Accommodation, social care, and health care
  5. Starting to study

Adaptive Product Reviews: The ‘All My Wheelchairs’ Edition (Kuschall K3, Quickie Helium, Invacare Spectra XTR, Salsa Jive M, Salsa M2)

The image shows a white room. On the far left is a balcony with a bicycle on it. On the far right is some stuff. In the centre of the image, which is black and white, is a white person in an electric wheelchair. They are almost upside down, with their head near the floor and their legs extended straight upwards into the air
Me upside down in my Quickie Salsa Jive M – Benjamin Gilbert // Wellcome Collect

……….What wheelchairs have you used during your life, and how have you found them?

A discussion with other wheelchair using friends

Having had an interesting conversation with other friends with progressing conditions, I thought it might be interesting for me to type up my thoughts as an Adaptive Product Review, for other wheelchair users to benefit from.

Reviewing these chairs, I’m going to progress through in the order of the progression of my disability. This is going to be a brief overview of each of the chairs rather than an indepth exploration of my wheelchair setup – though I plan to write a full review of at least some of the chairs in time – there’ll be a review of the Salsa M2, my current chair, very soon. In many ways the two manual or three electric wheelchairs could all be used with specific modifications to suit the needs of the same person, but each was obviously built for my needs at the time. Here I’ll focus on the chair itself rather than the features thereof – I’ll save those for the detailed reviews.

Kuschall K3

My first chair was the Kuschall K3, though I didn’t last long with it. It was a lightweight manual but without the resilience of the Quickie Helium and got its front frame bent several times in the short period I owned it. I quickly learned that it was not the right chair for me, because at the time I was very active and tough on my wheelchairs.

Quickie Helium

After I gave up getting the K3 repaired and replaced, I got a Quickie Helium which I loved and still have. It was a lot stronger than the K3, and it came with me when I moved to Spain. Out there, it was exposed to a lot of cobbles, dodgy kerbs, and drunken errors in driving, and I was really impressed by how well it stuck it out.

Because the Helium is so light,  I was able to use it far past when I would have had to give up using a heavy manual. It was also consistently possible to make changes to the set-up of the chair as my needs changed – cushions, footplate, castors, wheelrims could all be altered, and even when I could no longer use it outdoors, I could use it indoors for quite some time. 

Frustratingly I was given the sling back rather than a Jay backrest, and I think that was one of the reasons it became increasingly hard for me to use. I intend to buy a Jay backrest for it, probably quite a high-backed one, and then mount proper chest straps and seatbelts onto the chair, along with armrests. I’m hoping that a headrest can also be added, in order to make the chair something that can be used when I travel, to get around hotel rooms or to visit people’s houses where there’s a small step in.

If anyone has any tips on how this chair could be effectively modified to support me more sturdily so I could be pushed around indoors in it, please let me know!

Invacare Spectra XTR2

A black electric wheelchair with drive wheels at the back and large castors at the front
Invacare Spectra XTR2

When I could no longer even navigate my flat easily in a manual, wheelchair services and I decided it was time for an electric wheelchair, and the first one they chose me was the Invacare Spectra XTR2. I didn’t understand much about electric wheelchairs, but I was desperate – I had found myself on the brink of leaving uni becase I didn’t have the seating and positioning options I needed.

Even with this chair I still didn’t have them. I benefited enormously from the tilt function for repositioning, and the lateral supports for holding me in place, but overall I didn’t find it worked well for me. I think the problems I had were two-fold. Firstly, the chair wasn’t set up correctly to meet my needs, and secondly it was a rear wheel drive chair. This meant that the turn would always come from the back of the chair, and push the front of the chair round. I really struggled with this indoors especially, and the chair didn’t work well for me as a result.

Since that chair I’ve always decided to get a mid-wheel drive chair. I struggled so much with the steering on the XTR2 because the front of the chair was invariably smashing into one place and the back of the chair into another. The steering sensitivity was all wrong for me, and I needed something that was far more indoor-outdoor, whereas the XTR2 didn’t work indoors for me.

Quickie Salsa Jive M Hybrid

Jamie sits in front of a water fountain at the Barbican
Jamie Hale – promotional material for CRIPtic, Barbican Centre (Becky Bailey)

After I had a serious illness and pressure sore, with an acute exacerbation of my condition I spent a month in hospital and a number of months recuperating, and needed a chair that had more functionality than the XTR2 I owned had to offer me, and that was the point at which the Salsa Jive M Hybrid entered my world. Of the chairs I’ve owned, it is the best by a very long way, and I’m struggling with it no longer being my primary chair.

The Salsa Jive M Hybrid was my first 8mph chair, and that made such a difference to my life. I was able to dash for a crossing or a bus, though I generally stayed driving more slowly unless I had a good reason for speeding. The chair had a great sense of control even at  high speeds, and I really benefited from that, especially if I was driving on my own and trying to weave my way through crowds. It was also my first midwheel drive chair, and the change was an enormous improvement. I lost the unwieldy feeling I’d had with the rear wheel drive chair, and had better control and managed to move around indoors without gouging chunks out of every wall I passed. Despite being a mid-wheel drive, it was very good outdoors as well as indoors. I have used it off road quite a bit, and even on countryside without paths, and it has always managed to do whatever I ask it to do.

As well as the tilt-in-space I was used to, it offered powered leg raisers and powered recline, with far more supportive seating, though the flip away laterals were never supportive enough to hold my trunk in a stable way. The powered leg raisers were very fragile and broke repeatedly, which was a real problem for me. The tilt-in-space was also frustrating because it applies a speed limiter if the chair is tilted too far, which would mean I was absolutely fine, then would drive up  a slope or kerb, and suddenly apply the speed limiters. The hardware from the headrest left a long piece of metal sticking out behind me, at the perfect height for someone to walk into if the chair suddenly slowed or stopped unexpectedly. I eventually put foam tape on it to protect people’s heads –  but compared to the benefits of the chair, the drawbacks were minimal.

Quickie Salsa M2

An electric wheelchair with light grey wheels, a red underbelly, and grey and black seating.
Salsa M2 electric wheelchair

Unfortunately my condition progressed and the Salsa Jive M Hybrid no longer met my positioning needs, and had to be upgraded. There were quite expensive repairs that needed doing, and because I’d moved house and funding stream I ended up with wheelchair services just deciding to replace it all together, with a lesser chair – the Salsa M2. I kept the powered tilt/recline/leg raisers, but was very disappointed when my new chair was a 4mph chair instead of an 8mph chair, and was even more disappointed when I tried the controls and stopping distance.

Unlike my previous chair, the Salsa M2 had an RNET controller, which adds in a bit of delay when you’re using the joystick, along with less powerful brakes than the Salsa Jive M. I was surprised by how much worse a chair it was, but on the other hand it had a lot of the positioning support I needed mounting to it, including some very specialised armrests, so I’ve had to accept having a less good chair than my previous one. The stopping distance scares me because I worry about hitting someone as a result of it, but I can’t do anything beyond being careful.

The advantage of this chair is that now whenever my needs change a bit the chair can be upgraded to fit what I need. With my arms being increasingly hard to manage, I have wide channelled Otto Bock armrests to support my arms at the elbow, which maximises my ability to use  them. I have a specific shape of joystick to make it easier to drive, and a deep seat and backrest. I still struggle with the backrest as it is, and would really benefit from some better lateral supports, but it’s a lot more contoured and supportive than my previous chair.

I hope you found that whistlestop tour through my history of wheelchairs useful. I am hoping to do more detailed reviews of at least some of them in the New Year.

How have you found these wheelchairs to use and control – and do you think my brief review covers everything it needed to?

If you have any questions about these, or any other product, (or have recommendations of your own) just comment, email me at hale.jamie.r@gmail.com, or tweet @jamierhale

To see the other reviews in this series, go to Adaptive Product Reviews

If you make or sell a product you want me to review, drop me an email on hale.jamie.r@gmail.com

Disabled at Uni: 2. Disabled Students’ Allowance

Disabled Students' Allowance Quality Assurance logo

Last week in this series on applying to study as a disabled person, I wrote on the application process and turning disability to your advantage, and this week I’m writing about Disabled Students Allowance. They fund select equipment and support grants.

Disabled Students’ Allowance (or DSA) provides funding for support and equipment for disabled students in Higher Education. This includes help with the cost of a laptop and software, but also mentoring, study skills, and more. It’s an incredible opportunity, but it’s also a very slow process, and one it’s important to start as early as possible.

This meant that in June I got in touch with DSA to arrange a new assessment. Usually if you’ve had support in place in your undergraduate, this rolls over, but I’d been out of study for 3 years and my condition had progressed a lot, so I tried to persuade them to fund a new assessment. This took a lot of back and forth, but was eventually agreed, and I was able to book my assessment.

The reason I wanted a new assessment was partly because I wanted a full face-to-face discussion with my assessor – I wanted to make sure he got an overview of my current scenario and doing that over the telephone is difficult. Beyond that, I also wanted to be able to persuade them that while I can lift(ish) 1kg, I struggle with 1.5kg – and these fine details are easier to navigate over assessment.

Preparing for your assessment

Before I went to my assessment I did a lot of preparation. I made a list of all the support I’d received during my undergraduate degree, why I received it, what I got from it, and why I would need it again. I also went through a mental representation of the Uni year and looked at what support I needed as a result of that. The questions I asked myself and areas I made notes on to prepare for the DSA assessment are at the end of this blog. The important thing is to know what you want and need before you go into the assessment – if you know what you want out of it, you’ll have a far easier time of it than if you don’t.

At the assessment

Don’t be afraid to make it clear that you have some thoughts on what you want and need – but remember that your assessor is also an expert. The DSA assessors are not employed by the Student Loans Company, they’re independent contractors. They listen to your needs and write a report based on those, which they send to Student Finance England. This justifies what you need and why, SFE can then decide whether or not to fund the things you’ve been recommended.

If you think you might have forgotten to mention something, arrange for your centre to send you the report for your approval before they send it to SFE. You can also ask for the email address of your assessor, who you can then contact if there’s something you need that you forgot to mention, or was missing from your report.

If you have any complicated positioning needs, it’s worth requesting a separate ergonomic assessment. They can help you get set up with an ideal study environment at home and may know of equipment you didn’t. At my ergonomics assessment, I was recommended supports to hold the weight of my forearms while I typed – which were an incredible piece of equipment I would never have thought of

After the assessment

There are a series of time-lengths within which your assessment centre and SFE are expected to respond. Take note of these – and the minute something is overdue, chase it. Even if you started your DSA process on time, in June or July (as I did), it can still take a very long time, with equipment coming right up to the line in terms of when you start your course. Mine has now started, for example, and I still haven’t heard back about the ergonomic equipment. I know that had I been more on top of chasing SFE the moment they were late in contacting me I would have had things done more quickly – instead my course has long since started and I still don’t have all the equipment sorted,

Once your assessment is over, this doesn’t mean your relationship with that centre is also over. Your assessor is who you would need to contact if something changed with your needs and the support you require. When I did my undergraduate, I was back to the centre almost every year getting updates to my needs assessment put in place.

In the next part, I will discuss what you need to set up before your course begins, to have an easy ride of it at University.

The things I prepared for my assessment

Technology

  • Laptop
    • Under 1kg
    • Resilient or insured
    • Light keyboard
  • Software
    • Dictation (Dragon)
    • Mind-mapping (Freemind)
    • Screen reader / reading back (ClaroRead)
    • Microsoft Office
    • Lecture/seminar recording (Sonocent Audio Notetaker)
  • Laptop bag
  • Microphone for lecture/seminar recording

Personal support
DSA refuse to fund anyone to support you with personal care – so they won’t fund someone to empty my catheter bag, but they will fund other things like mentoring. Any personal care support you need will have to be arranged through social services or continuing healthcare

  • Mentor to help me with balancing illness and study
  • Study skills tutoring
  • Support using the library

Study at home equipment

  • Ergonomic equipment
  • Upright mouse
  • Arm supports that clamp to the desk
  • Easy to tap keyboard
  • Height adjustable desk
  • Table to go over bed
  • Second monitor with monitor arm
  • Laptop bed desk
  • Support for holding books for me
  • Printer
  • Scanner

The Uni year

  • Reaching and using campus
    • How do I get to campus?
    • How do I find my buildings?
    • How do I get into my buildings?
    • How do I open their doors
    • How do I get around my buildings?
    • How do I go to the toilet?
    • What support do I need to use the toilet?
    • What equipment do I need to use the toilet (e.g. hoist)?
  • Library
    • How do I find it?
    • How do I access it?
    • What do I need to study (g. height adjustable desk, accessible plug sockets, dictation software, somewhere quiet to dictate, wheelchair charging point, help getting my laptop out and set up)?
    • What if I want a book? What support do I need to find and get a book?
    • What if I can’t get to the library – how do I borrow books?
    • How long do I need books for?
  • Class
    • How will I discuss my needs with the professors? What do they need to know?
    • What information do I need in advance?
    • How do I take notes?
    • How do I organise my notes and reading?
    • How do I prepare my contributions?
    • What do I do if I’m going to miss class?
    • How do I discuss my needs with the tutor?
  • Essay submissions
    • What extra support do I need to prepare for an essay?
    • How will I get the books I need?
    • How will I get the articles I need?
    • How will I type it?
    • How will I proof-read it?
    • What will I struggle with (e.g. referencing)?
    • How long will I need?
    • What will I do if I fall ill and can’t submit on time?
    • How will I hand them in if I can’t get to campus?
    • Will I need longer than other students?
  • Exams
    • How will I write my exams?
    • What special software will I need?
    • What special equipment will I need?
    • Will I need longer than other students?
    • Will I be able to do them in the same room as other students?
    • What will I do if I’m ill on the day of the exam?
  • Emotional and study skills
    • Do I have any mental health issues I might benefit from support with?
    • How will my learning difficulties affect my study?

 If you have any thoughts, questions or comments, leave a comment here, email me on hale.jamie.r@gmail.com, or tweet me @jamierhale

The ‘disabled at uni’ series

  1. Applying to study
  2. Disabled Students’ Allowance
  3. Before your course begins (and who’s there to help)
  4. Accommodation, social care, and health care
  5. Starting to study

Disabled at Uni: 1. Applying to study

Signpost to Harvard, Cambridge, Oxford

Introducing the Disabled at Uni series

This covers a number of aspects of the disabled student experience, serving as advice and guidance on studying as a disabled student, the support that’s out there, and how to access it.

  1. Applying to study
  2. Disabled Students’ Allowance
  3. Before your course begins (and who’s there to help)
  4. Accomodation, social care, and healthcare
  5. Starting to study

Studying as a disabled student can be logistically complex, with numerous things to consider. During my Undergraduate degree I received a lot of support from my (small) University, and after I graduated I took 3 years out. I returned to University to begin a Master’s this autumn, and have written this series of articles on returning to study whilst disabled.

Part 1: Choosing a course

When choosing a course, it’s important to balance what interests you, what you enjoy, and where you want your career to go. All of these factors are important in selecting a degree that you will be happy you selected. When I did my undergraduate, I knew I liked reading, and languages interested me, but a literature and language degree didn’t especially relate to my desired career (at the time journalism). I didn’t know how one became a journalist (answer: get involved with your Uni paper), and I just liked reading and writing.

This time I knew I was interested in policy, health, and writing, and wanted a future in health and social care policy or journalism. I knew that I wanted to make a difference in this area, so I noted down some relevant Master’s degrees, and went away to think about them. I narrowed down my list, and then started to apply. It was a big career shift from literature and language to health and social care, but I got offers for all my desired courses. How did I achieve this?

Turning your experiences to your advantage

A compelling personal statement needs to show the University that you understand the course, that you have the academic background and/or interests to excel in it, and that they should admit you, rather than another equally qualified applicant. Impairment and disability often lead to different life-experiences and paths to non-disabled students, but this can be used to your advantage.

Because I was applying for health and social care related Masters’ – whether with a policy or theoretical focus – it was easy for me to link my experience with what they were looking for. If you’re applying for something that isn’t connected to your disability, are there ways you can use it anyway? For example, if you completed your A Levels despite spending a month in hospital, you can use this as evidence of your commitment to study even when it’s challenging.

It isn’t enough to just tell them about you, or about why they should admit you, it’s also essential to show that you’re capable of the course. I didn’t have the academic background the Universities I was applying to were looking for, so I had to find ways of demonstrating my understanding of the issues that would come up in the course. In order to show this, I linked my experience to wider issues that I knew would come up. I could link ethical debates in healthcare to my own experience to discuss – for example – . I talked about treatments for rare conditions and genomic medicine, and the cost of this, and asked whether you can aggregate benefits – how many ingrown toenail removals is one life extended worth – in financial and moral terms. This demonstrated the academic experience, but also highlighted what made me a different candidate – that my experience was real-world.

Making a selection

When I got offers from my top three choices, I had to decide which to select. One of the hard things about study as a disabled student is that you have to consider so many more things than non-disabled things as crucial. It wasn’t just whether I wanted to be part-time or full-time, it was what happened if I was in hospital and needed to interrupt my course. It was how long I had to complete the degree in if I interrupted at every opportunity. It was assessment modes and how this altered between courses. The minimum attendance required to pass the modules. The support offered to disabled students at the institution. When I had to consider these things, the course I eventually chose wasn’t my favourite.

I originally applied to do all of the Masters’ on a part-time basis, but completing in two years was going to be a challenge. A lot of my time is spent on disability – on managing all the exercise, physio, personal care, wound care, etc that are associated with my condition. A lot more time is spent managing my team of PAs (I employ my own Personal Assistants or PAs who support me with care tasks related to my impairments, using funding from the NHS), going to health appointments, juggling phone calls. On top of that, I have my journalism, the London Writers’ Awards, and a guide I’m writing on care and support. Doing a Master’s in two years would have been difficult under the best circumstances, and if my health took a dip it would quickly have become impossible.

I discussed this with my top two choices. My favourite institution said I had to do the Master’s within 2 years, and my only option was to interrupt my studies if I couldn’t. The other suggested I do it on a modular basis, signing up for, paying for, and completing modules at my own pace, with a maximum course length of 5 years. It was an easy choice. I was going for the one where I could study over up to 5 years if necessary. Because of restrictions on Disabled Students Allowance I have to be completing 25% of my Master’s a year, so that gives me an expected course duration of 4 years.

Seeking advice

If you’re struggling to decide between several courses, there are often people you can contact who will be able to give you advice on what course would work best for you, taking into account your interests and experience, but also your impairments.

  • Course conveners – if you’re struggling to choose between courses, or want to discuss the specific ways a course is being delivered, and how that meets with your impairments and study preferences, you can often drop an email to the person who runs the course and ask them about it. When I was choosing between my two favourite institutions, it was a discussion with the course convener that made me decide the two year course wasn’t for me
  • Disability services – if you have questions about the accommodation or the estate, disability services are often able to help. They’ll be able to tell you how accessible your campus is, whether the Uni has accommodation that meets your needs, how flexible the extenuating circumstances procedure is, and what sorts of support are available at your institution
  • Disabled Students’ Officer – lots of Universities now have some form of Disabled Students’ Officer or Network. This is usually an unpaid, elected role, done by a student on top of their studies. They won’t necessarily have the same impairment as you, or know much about your impairment or needs, but they are quite likely to be able to put you in touch with other students in similar situations to yours, with whom you can discuss what it’s actually like to study there

Having gone through the summer and arrived at my institution, I am starting to regret my choice – but more on that later. For now, in the next post, I’ll talk about my Disabled Students Allowance experience.

If you have any thoughts, questions or comments, leave a comment here, email me on hale.jamie.r@gmail.com, or tweet me @jamierhale

The ‘disabled at uni’ series

  1. Applying to study
  2. Disabled Students’ Allowance
  3. Before your course begins (and who’s there to help)
  4. Accommodation, social care, and health care
  5. Starting to study

Adaptive Product Reviews: App Edition (Medisafe, Google Voice Access, Todoist)

……….Which apps do you find most useful as a disabled person?

A discussion on a webforum

My Android phone is in many ways one of my main adaptive devices – possibly second only to my wheelchair. It substitutes for my hands, my voice, my laptop, and is my main communication with the world. This relies on a series of effective apps I use to organise my day – the main three of which are Medisafe, Google Voice Access (integrated with Google Assistant),  and Todoist. Without these apps, my disorganised brain would lead to my medication being forgotten, my phone would become unusable, and my relationship with my PAs would break down.

I’ve heard great things about Apple’s adaptive functions, but since I’m an Android user, I can’t review them – sorry! Some of these apps may also be available for Apple users.

Medisafe

Medisafe logo

I use Medisafe to manage my medication. I have a collection of medications, some of which are every three months, others three or four times a day, or specific days of the week, or every few days – there is very little rhythm or routine. This obviously makes them hard to remember, and I very quickly start to struggle. I was thrilled to find Medisafe, which I now use for all my reminders.

The home screen displays a pillbox divided into four sections, Morning, Afternoon, Evening, and Night. When you add a medication, you name it (this can be the active ingredient, or can be a name you use to represent it. You set what time you want reminding, and how many times a day, and you set the schedule. You then choose a shape and colour to display in your ‘pill box’, and can set food instructions, dosages, and prescription refill dates if you wish.

Medisafe is a very annoying app – and with a medication reminder app that’s essential. You can set up to ten reminders per medication, and a snooze duration of 5 minutes to 2 hours, it does sound, vibration, and LED light reminders. You can set it to popup when it reminds you (thus interrupting whatever you were using your phone for), and you can shake your phone to tell it you’ve taken the medication. You can ask it to remind you to bring your meds with you every day, and you can set a different schedule for weekend medications.

It also has a setting called “Medfriend” where you can ask it to contact a friend if you haven’t marked your medication as taken, though I’ve never succeeded in getting that working.

Google Voice Access and Google Assistant

Google voice logo

Google Voice Access integrates with Google Assistant to allow you to control your phone quickly and easily using your voice.  I have been using the Beta program for about 18 months, but it has finally launched, and I can’t recommend it more wholeheartedly. It expands the capacities of Google Assistant to allow you to interact with your phone screen vocally and in a hands-free manner. To do this, it tags anywhere you might want to tap with numbers, which you just have to say in order to tap. It works beyond that as well – and the newest version is a lot less buggy than I used to find it.

It has an array of commands from “go home” to “show notifications” “switch off Wifi” or “open [app name]” and inside the apps you can interact with them using the numbers system – it works very well with Medisafe, for example.

It also has typing functions, which I really like. They aren’t ideal and it often struggles with my voice (which is affected by my condition), but they’re more than enough for general messaging. It allows me not only to type, but also to edit what I’ve written. I can move the cursor where I want it, or rephrase an entire sentence. I would struggle to write an essay with it, but I can easily write a good blog post (that said, I nearly emailed someone today to say “thank you for taking hair off my dog” rather than “thank you for taking care of my dog” – so it always pays to check thoroughly.

Todoist

Todoist logo

Rarely do I think a subscription model is worth purchasing, but if anything was, it would be premium on Todoist. There are many to-do list apps, Remember the Milk and Wunderlist being well known, but despite them I chose to use Todoist. Why? It does location based reminders – so if I need to do something whenever I get home, I can. It allows me say to my phone “note to self, schedule blog post tomorrow”. It keeps track of my tasks – a simple request to make of a to-do list program, but one that many of the apps I’ve tried have failed.

I own a basic android tablet which my PAs (carers) have to use while at work, and Todoist is probably the main reason why I own it. I needed an app that would let me add tasks for my PAs to do, and then observe when those tasks were ticked off. I needed all the jobs that were repeated daily come up on the app in that pattern, while the ones that only needed doing monthly repeated on that schedule.

I needed to choose an app that would be simple. I didn’t want to have to worry about my PAs picking it up, or to do training sessions to teach PAs how to use it. I wanted something where marking tasks as done was simple and intuitive – and that’s why I chose Todoist.

If you have any questions about these, or any other product, (or have recommendations of your own) just comment, email me at hale.jamie.r@gmail.com, or tweet @jamierhale

To see the other reviews in this series, go to Adaptive Product Reviews

If you make or sell a product you want me to review, drop me an email on hale.jamie.r@gmail.com