Adaption = grief + pragmatism

Jamie against a brick wall

For me, the hardest thing about living with progressive impairment rather than the static impairment I hoped I had is that shifting relationship with the ground. Just as I know what I can do, and what I can expect, this is thrown into relief by a new problem cropping up out of nowhere. I thought I knew what was wrong, then last spring I developed a life-threatening hormone imbalance that I had known nothing about – hadn’t even realised that bit of me could break. There’s always something in flux, something that startles me with how it changes. I have been gifted with an intimate relationship with the decomposition of my body.

Adaption = grief + pragmatism

Adaption means acknowledging the loss, and the grief, and moving forward. It means making room in my heart for feelings I think will eat me alive. I cannot adapt without accepting the grief. I cannot let the grief swallow me. Therefore I must be pragmatic, layer that on top of grieving. I allow it this room in my head and no more. I let it sit with me, and then tell it: enough. I must walk the dog. My catheter bag is screaming. I tell this to my head, and I let life take over. It is hard to dwell on grief when life keeps demanding that I move on with it. This has saved me many times.

This tension between dwelling and ignoring is a balancing act I struggle with. It’s something I want to balance, it’s something which balances me on a wire. I can’t stumble too much to one side or another without losing the beauty and the creativity which grows out of complexity for me. I resist simple narratives.

Pragmatism = adaption – grief

There is no room for lazy grieving amidst my pragmatism. Grief is removed from the adaption that it shades in bluish greys, the colour of a squawking pidgeon – beauty and annoyance all in one structure.

Pragmatism is what keeps me plodding forward. It is pragmatism that pays the rent early, the night before a medical procedure, when I am up late anxiously awaiting what the morning brings. Pragmatism does these things, because she knows that come what may, the jobs need doing. I learned this from my mother – whatever was going on in her life, the kitchen floor stayed scrubbed. Well, mine isn’t, but the principle’s the same, even if I live in a hoarder’s paradise – boxes of meal replacement and catheter supplies lining the walls, even if I come from a generation that buys and discards possessions freely, rather than staying up late darning ripped bedsheets.

So the rent is paid, though there is little risk of something going wrong. Pragmatism winning out.

Grief = adaption – pragmatism

This part of the equation seems odd, but grief is the process of adaption when I’m not able to be pragmatic. Grief is watching my life be adapted by progression, when I can’t make the decisions that keep me plodding on. Grief was the wheelchair services wheelchair that was never supportive enough, and whose sight I hated, for the ugliness. Grief is the changing boundaries of my body, without the knowledge that I can move forward. Grief is counting the losses, and not counting the friendships, knowledge, or experiences I’ve gained.

How do we talk about grief as disabled people? Writing about disability I wish to stake my claim to joy – say “I flew here, as free as a kite, and was happy”. I wish to call from the rooftops that this relationship is here with my body. I wish to tell the world that I was here, and I was happy. I will not let someone write tragedy on my body, and sell a package in one dimension. I will not be your inspiration for existing.

Disabled people whisper the harder parts in condition-specific groups, or one on one. A nevous confession of the frailties of our bodies. Discussing the misery of transferring to ‘accessible’ toilets with no hoist, the depression that can eat you at night, untreated pain and bodies that slow early.

I acknowledge the grief of my legs not responding when I ask for movement, but that grief is tempered and strengthened by the rage of broken lifts. Both are real pains. I cook food I will never taste.

Adaption, grief, and pragmatism are inseparable

They work towards a solution for me where I can be a whole person – acknowledge what my body is doing, acknowledge what society has done to me.  Losing any part of that equation means losing myself – whether I subsume my emotions or my desire to live in the world, I cannot adapt without holding both those things.

There is no shame in grieving. There is no shame in changing your life. There is no shame in pragmatism. There is no shame in survival. There is no shame, eventually, in no longer surviving.

Forced to crowdfund her independence: support Fi’s wheelchair fundraiser

Fi Anderson next to the Muscular Dystrophy UK banner

Fi Anderson is fundraising for a wheelchair. To get one that meets her needs, she has to raise £14,125. She’s applied for countless grants, but will still need to fundraise a lot of the cost herself. If you can help by donating, please do so here: https://www.justgiving.com/crowdfunding/fisnewchair
If you can’t, consider sharing this.

Note: I hate the tragedy model that requires people to parade their misery in order to raise money to get support and equipment. The state should be giving people who need wheelchairs the weekchairs they need – but it isn’t, and Fi is suffering as a result. Please consider donating even if you too hate that Fi is forced to do this.

As many of you know, before I got the right wheelchair, I was incredibly limited. I had a wheelchair from wheelchair services that did not meet my needs, and that I couldn’t spend any time in. I was lucky enough to be able to get a wheelchair that instead supported my body enough to let me go out, and live in the world. That wheelchair made it possible for me to perform at Transpose, to apply for a Master’s – to start the Master’s, to travel again, to apply for, and get, Barbican OpenLab, and to do my internship this summer at Muscular Dystrophy UK.

It was probably through that internship that I first encountered Fi’s blog. She is a passionate advocate for Changing Places toilets, a cause that I too care enormously about. We are both dependent on hoists to safely move out of our wheelchairs, and Fi has done a huge amount of work campaigning for toilets adequately equipped to meet needs like ours. She does a lot of work on public transport access – and is now unable to safely access it herself.

I was lucky enough recently to get the chair I now need funded through wheelchair services. My needs have changed, I needed a different controller, more supportive seating and armrests, and a different backrest. Wheelchair services paid for a chair that does everything I need. Sure, it doesn’t include a riser so I get get things off supermarket shelves, or go at 8pmh rather than 4mph, but those things are preferences, not needs. I am able to live my life in this chair.

Fi wasn’t that lucky. Wheelchair services have been of no support for her in getting the chair she needs, and instead she’s been abandoned, in a chair that breaks down whenever she leaves the house. She has a rare form of muscular dystrophy – and is the mother of two girls.

Her blog was incredible for me to read. Here was someone in a similar situation to me (different condition but similar needs), and she was an active campaigner, a mother, and an independent women, living her life. It was one of the things that helped me when I was nervous about starting my Master’s. Reading her blog (she’s one of the #MDBloggersCrew who all have muscular dystrophy and coordinate their blogs on living their lives) showed me that it was possible to do the things I wanted to do – because other people like Fi had achieved a truly self-directed life.

She doesn’t have a chair she can use to live in the world any more. She can’t safely go out alone, or do the school run, or any of the million other things an independent woman who is also mum of two young girls might want to do. Instead, she’s reliant on a chair that might break for good every time she leaves the house. Going out at all has become a military operation.

My chair is designed to support me in repositioning, to help prevent me from getting more pressure sores. Fi doesn’t have that – those functions on her existing chair have broken, meaning she risks this every time she goes into the world. Wheelchair services are refusing to fund her a chair with these features for her to use, and without them she has no way of safely repositioning, meaning pressure sores – which are incredibly painful and take months to years to heal – are a constant risk for her, whenever she spends time in her chair.

I met her offline at the national MDUK conference this year, where we were speaking on a panel on independent living, and she was kind enough to answer my endless questions on being a disabled mother and how she found that – questions I ask because I too want to parent, and she’s the only person facing similar impairment to me who I know to have achieved it. She won the Campaigner of the Year award at that conference for her ceaseless work on behalf of herself and others – people like me – in her Changing Places toilet campaigning.

I could attend all the panels I was in the building for, before heading home, but Fi, whose chair didn’t let her reposition, was prevented from doing this. She had to miss panels she would rather attend, because she was limited by how long she could safely be in her wheelchair. Instead, she was trapped lying down in bed in pain from the inappropriate chair, until she was safe to get up again.

She hasn’t asked me to write this, she wouldn’t ever do that. I’m writing this anyway. Friends, friends who know what having the right chair did to my life, if any of you have any spare money, could you look at chucking some money into the fundraiser? She’s applied for lots of grants, is doing all the fundraising she can, and even with the grants will have to raise most of the cost of the chair.

Adaptive Product Reviews – catheter edition (leg bag, night bag, and hanger)

……….I’m about to get a supra-publc catheter. Which leg bags and night bags have people found most useful?

A friend

Having done a set of reviews of products that are of quite general appeal – wheelchair-related ones – this is a little more niche.

When I first got a catheter I had no idea what products would work for me. There were so many out there, and I couldn’t figure out what I needed. Leg bags and night bags seemed central to catheter management, but there were so many brands that I got really stuck working out what to use. I couldn’t find reviews, and it took me years to settle on some products that I liked. Having done so, I thought I’d better review them! These products have changed my life, and they are the Bendi Bag, the FlexiHang, and my beloved 3 litre night bags.

Bendi bag by Manfred Sauer

Catheter bag
The bendi-bag by Manfred Sauer

I used the bendi bag leg bag when I was more active as a wheelchair user, and stopped using it when I was functionally unable to use my chair. I recently restarted, and am reminded again how great it is.

Most catheter bags are designed and shaped for people walking. They fit tightly around the calf or thigh, and the goal is to prevent them falling down. They assume that the wearer will have no trouble finding somewhere to empty it, and generally don’t meet the needs of wheelchair users. When I found the bendi-bag for the first time, I was thrilled, because it ticked all my boxes.

It’s designed to be worn on a bent leg by someone sat down. This means that the weight of the bag hangs from a strap that goes above the knee, and the strap at the bottom of the calf simply holds it in place and against the body. This does mean more weight going through your leg to the chair cushion, and to the footrest, but this has never caused problems for me. The back of the bag is made with a flocking material to be soft against the leg, and the straps can be cut to length, to some extent. The bag is very long, stretching from above my knee right down to my ankle-bone, meaning a PA or carer can easily get the valve out from the bottom of my jeans in order to empty the bag.

While I often have problems with skinny jeans compressing catheter bags and limiting their size, I don’t struggle with that here. Instead, the bag is able to fill to about 80% of its full capacity, even in very skinny jeans (though this can make my two legs look very unevenly shaped.

The best thing about this bag is the capacity: 1,300 ml, or well over a litre. This is incredible, because it allows me to last a lot longer between bag emptying – and I don’t have to limit my fluid intake. Because the bag is so long, it doesn’t stick out nearly as much as you’d think for the capacity, and it just takes away the anxiety of when I’d next find an appropriate accessible toilet.

There are two capacities available, 700ml and 1300ml, and a variety of types of tap, tube length, and sterility. I choose the 1300ml capacity obviously, with the 35cm adjustable inlet tube (which can be cut to your desired length, then a connector fits into the tube to link it to your catheter), and sterile. If you’re prone to infections I definitely recommend sterility.

You can request a free sample. Try it and let me know what you think!

Flexihang by Flexicare

Catheter bag hanger
The Flexihang catheter bag hanger by Flexicare

Until I used the flexihang, I thought all night-bag hangers were about the same: lasted a couple of weeks, tore through the top corners / holes in the night bag, fell off the bed all the time, and eventually snapped. Then I was discharged from hospital with my supplies, and this miraculous object appeared before me. Since then, I refuse to be separated from this – all my feelings about my catheter are projected into my need to have a flexihang spare. I’m not joking.

It’s just a catheter bag hanger, but it’s the perfect catheter bag hanger. Most catheter bags have at least 4 push-out holes at the top, but many hangers only have two points at which a bag can be attached. This hanger has four points, and the ones at each end have a clip that goes over the plastic of the bag, securing it in place. This means that the bags stay securely attached. The hanger is also strong enough to hold a full 3 litre catheter bag – more than can be said for most. It has a handle for carrying the catheter bag, and on top of the handle is a clip to keep the tubing running down into the bag straight.

There are a multitude of ways of attaching the bag to your bed – the handles bend to hook over rails on a bed, or onto rope grips either side of your mattress, but also fold flat between a mattress and bed, to leave the bag hanging that way instead – not needing a rail. I’ve used both methods, depending on the bed I’ve been sleeping in.

The bad news is I have no idea how to get you one of these hangers. If I had enough people who were interested, I’d potentially buy them in bulk and sell on to other people. Otherwise, you can try approaching Flexicare directly, or contact your medical supplies company. Flexicare do their own medical supplies delivery, so if your GP will let you order your catheter supplies through them, that might be another way of getting your hands on their hanger – that worked for me in the past.

Linc 3 litre sterile single use night bag

Catheter night bag
The single use night drainage bag by Linc. This is the two litre one (I think) but the three litre one looks the same.

The 3 litre sterile single use catheter bag solved one of the problems with care, catheters and drinking for me. I was always limited in how much I can drink by the size of my catheter bag. This is something I find particularly difficult when I’m relying on a PA to come in and empty my catheter bag in the morning, and when I get a very dry mouth from my medication.

The solution for me has been this 3 litre night bag. A bag of that capacity is hard to fill overnight, and it makes me a lot less anxious about being left an indeterminable amount of time if a PA is late.

If you get a lot of infections, using the same night bag (as often recommended) for 5-7 days can be a major cause of infection. For me, swapping from that to sterile single use bags really helped. If you’re leaving a night bag alone all day, then reconnecting to it every night, the bacteria left in the bag breed and colonise it, massively increasing your infection risk. I now only use these 3 litre single use night bags, which work far better for me.

The downside is the tap. They’re designed such that once the bag has been opened to be drained, it cannot be closed again. This means that they can’t accidentally be used, put aside, then reused, but the tap itself is very poorly designed. In theory, the bottom of the tap can be twisted off, allowing it to drain, but in practice that is very difficult for PAs to do – and impossible to do without getting covered in urine. Some cut it off, while others simply cut a slit in the bag in order to drain it – but regardless of method, it can be a messy procedure.

These three products have been integral to my catheter management, and I highly recommend them.

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

Being disabled: I am the single use plastics crisis – and that’s okay

Catheter night bag
The single use night drainage bag by Linc. This is the two litre one (I think) but the three litre one looks the same.

I could weep when I look at the mound of plastic I create each day, or week. The toll is ridiculous. What I have to remember is that this is what single use plastics are there for. This is because, like many other ill and disabled people, I rely on them for survival.

Catheter:

  • 7 overnight bags each week (I tried using the ones that lasted a week, but they contributed to my sepsis, so I was forced to swap to ones lasting a day)
  • The individual sterile bags that each of those catheter bags came in
  • The plastic cap on the end of the tubing for each of those bags
  • The 1 leg bag each week (and that’s using them the maximum time considered safe)
  • The individual sterile bags that those catheter bags came in
  • The plastic cap that came on the end of the catheter bag tubing
  • 1 leg valve each week
  • The individual sterile bag that the valve came in
  • The individual plastic bag that the individual sterile bag containing the leg bag valve comes in (for no reason)
  • The plastic cap that came on the end of the leg valve
  • 3 bladder washouts each week (at a minimum)
  • The individual sterile bag that those came in

Feeding tube

  • Three syringes a week (washing and reusing syringes isn’t the safest option, but I do what I can to use things for longer than a single time)
  • The sterile packaging for those syringes
  • At least one syringe cap a week and often more
  • The sterile packaging for the syringe cap(s)
  • 7 litre bottles for the tube feed
  • The individual packaging that those bottles came in
  • The throwaway lid on the bottles
  • 7 giving sets (the tubing that connects the tube feed bottle to the tube)
  • The individual packaging those came in
  • The throwaway plastic caps on either end of the giving set
  • Thankfully the tube feed itself now comes in paper bottles and foil packets
  • The (up to) 5 straws I throw away each day that came attached to the paper bottles with the tube feed in

Heel wound (I have a sore on my heel which is dressed by nurses 3 times a week)

  • Six sets of disposeable gloves
  • Three disposeable aprons
  • Three sterile kits, which come in a plastic package, which contains a plastic bin bag and a plastic tray, and plastic packets of saline
  • At least three sets of the bandages they use are wrapped in plastic
  • The three dressings they use are wrapped in plastic
  • The material they put between the wound and the dressing is wrapped in plastic

Other

  • If I have a drink while out (I shouldn’t – I really shouldn’t – but I do) I don’t use a reuseable cup. I need to buy one, but I can’t keep a used reuseable cup on my lap until I next have a chance to give it to someone to wash up, and I can’t independently get it into my bag, so I haven’t figured out a solution
  • Any drinks I have need a straw – my swallow is compromised, and I have to use one to swallow safely
  • Many of the sprays and inhalers I have for my asthma etc are made of plastic
  • The gloves my carers use to do my personal care are plastic
  • Part of the equipment for my bowel program comes wrapped in plastic

There’s probably plenty more that I’ve forgotten. If it wouldn’t be horrendously unhygenic, I’d take a photo of it all in a pile.

All of this is okay. Single use plastics were part of one of the biggest medical revolutions of the 20th century. The more we discovered about how infections are caused, the more crucial single use plastics became to fighting them. Sterile catheter bags keep me out of hospital and prevent me getting urosepsis. The feeding tube and all the plastic involved in it keeps me alive. Straws mean I can swallow things with a reduced chance of choking. All of these things are crucial to me staying alive – and the same is true for many other people with long-term health conditions.

There is a lot that the NHS could do to move towards a more environmentally friendly way of managing its waste – but calls to eliminate single use plastics from society entirely, to fine people for the single use plastic waste they create, or to abolish plastic straws are all calls that will affect disabled people far more than they do anyone else.

Balloons. Let’s all focus on abolishing non-recyclable plastic balloons – they’re an unnecessary single-use plastic without (unless I’m mistaken) a clinical use in keeping people alive.

Living the Life I Want: The Freedom to Fail

A blue and white background, with text superimposed "I can accept failure, everyone fails at something, but I can't accept not trying" Michael Jordan success.com

This is part 2 of a blog exploring my “living the life you want” panel discussion at the annual Young People’s stream of the Muscular Dystrophy UK conference. I spoke alongside Lucy Watts and Fi Anderson, and discussed two issues at the conference, one was about managing PAs to maximise my ability to live the life I want, and the other was about the freedom to fail. You can read part 1 here.

Living the life I want means living my best life – but also living my worst. It means being able to do incredible things, but it also means the freedom to make mistakes.

If you’ve grown up disabled, you may have had very protective parents, teachers etc, who have supported you to ensure that you always made the best decision, that the effects of your mistakes were mitigated, and that you never had to feel failure. This is a common response of the people surrounding an ill or disabled child because they don’t want to see a disabled child hurt or upset – but never knowing failure as a child means not knowing how to handle it as an adult.

I hate being wrong, I really hate having to admit I was wrong – because I never learned that actually it’s okay to be wrong, it’s okay to make mistakes, and it’s okay to fail.

Having PAs makes this ten times worse. I would always rather give up control than risk being wrong, and thus if a PA suggests I do something I do it. I would rather risk them being wrong than risk being wrong myself. This makes me very vulnererable, because I don’t have the courage to challenge them, so I’m very open to their manipulation. If a PA wants to make me choose a particular bus route thinking it’s faster, I might disagree once but I’ll always pick their route, because it would feel so shameful to pick a dfferent one and then be wrong. The thing is, it’s a PA’s job, but it’s my life, and I should have the right to go on whichever bus route I choose, without reference to a PA and without worrying about how I would feel if I was wrong.

Learning to have the courage to be clear about what I want, and to make my decisions has been really difficult. I moved from being guided in life by my parents to being guided by PAs without much independence to establish doing things my way. Being able to live the life I want means having the emotional resilience necessary to be able to cope with failure. It means being able to take on big projects accepting that they might not work out, and that’s okay. It means learning to assert myself and confront PAs when I feel like they’re limiting my freedom to fail.

Moving from childhood to adulthood has a number of social rituals, many of which involve going out and drinking, dating unsuitable people, maybe trying drugs – and when you’re reliant on your family support, and are maybe really ill, these things are a lot harder to do. This can leave you feeling trapped in a netherland – neither child nor adult. Disabled children are often prevented from making these “mistakes” – but it isn’t always a mistake, and the opportunity to try these things should be extended to young adults as well. It’s important that disabled young people are given the opportunities associated with these social rituals – and that the support is put in place for doing that.

The freedom to fail is, I think, as importance as the freedom to succeed. The freedom to try things and learn what works for you. The freedom to take opportunities and then discard them. The freedom to take risks, and the courage to accept the consequences, These freedoms are how we grow as people, and it’s important that disabled children aren’t cut out of the opportunity to grow and learn like this. Through this, we become adults capable of making our own happiness. I’m learning that responsibility for making my decisions lies with me. That I can be proud of my successes and work.

Now read Part 1: PA management

Living the Life I Want – PA Management

White background with black text saying "if there's one thing I'm willing to bet on, it's myself", and the word "beyoncé" beneath, to indicate that it's a Beyoncé quote.

I spoke at the Trailblazers Young People’s conference last Saturday (13th Oct), alongside two other excellent speakers – Lucy Watts and Fi Anderson. The topic was ‘living the life you want’ and making notes for my remarks made me realise – in the past year, I’ve really gone from living a life that I didn’t want to living the life I wanted. This blog will be in two parts, as I wanted to cover two key areas. The first, this blog, focuses on managing PAs, and the second on the freedom to make mistakes and to fail, and can be read here.

Central to me living the life I’ve built has been my carers – and the relationships I have with them. I call carers ‘Personal Assistants’ or ‘PAs’ – because their role is to assist me, not to care for me. There’s a subtle difference in dynamic between those two words/phrases – the word ‘carer’ symbolises something ‘nice’, ‘charity’, doing a good thing for someone. Calling them PAs instead means acknowledging that they are there to assist me and that the manner in which they assist me is up to me.

Having employed PAs now for somewhere in the region of 6-8 years I’ve learned a lot, and having the right team around me is central to me living the life I want. In order to hire and keep the right people around me, I have four key things to keep in mind:


  1. I’m their employer – I hate to think of it in such a managerial perspective, but in practice, I run a small business. It employs 6-8 people. The people I employ work for me, making a product. That product is my autonomous life. Therefore, if one of the PAs isn’t effective in the manufacture of that product, then I need to work out how to alter that situation – whether it’s training, or disciplinary, it’s something that needs changing. Thinking of things this way really helps me assess my PAs and whether I’m getting what I need from them.

  2. Be friendly not friends – I really get on with a lot of my PAs, and by the end of the day I think “wow, I’ve been really social today…” then I realise the only people I’ve socialised with have been literally paid to be there. That’s not a bad thing, but it means I need to make sure that I don’t let PAs substitute for friends. It’s really important that I go and make the effort to hang out with, or text, my friends. This also means knowing that I shouldn’t be providing high levels of emotional support for PAs. It means be friendly, listen to an extent, but if it’s impacting on my ability to live my life I need to shut it down – PAs are there to support me in living independently, and if supporting them is affecting my quality of life I need to direct them elsewhere. This feels harsh, but supporting someone who is really struggling can be very draining, and I need to focus my emotional energy on supporting friends in reciprocal relationships, not supporting PAs.

  3. Make your decisions – don’t let your PA tell you what to do. This one really matters to me, and overlaps with the freedom to make mistakes – you need to be the one making the decisions about your life. I’m always interested in advice from PAs – “which shirt should I buy? – what do you think fits better?” or “would the train or the bus be easier?” but I need to make the final decision myself. I really struggle when a PA tries to push one option on me after I’ve heard their advice. I’m trying to learn to say “I understand why you think we should get the bus, but I’ve decided to get the train” – when a PA pushes their preference I’m trying to learn to push back and be explicit about my decision. When the PA keeps saying “but the bus…” I’m trying to learn to say “I’ve decided to get the train – so let’s head to the station” and not let the PA talk me out of what I’ve decided, but this is really difficult and I’m still struggling with it.

  4. Structure – your PAs are people and they have personal lives as well. This means they need to know what’s expected of them. They need their rota with enough time to plan their private lives. They need to know what they’ll be paid and when, what happens if they’re absent, and what happens if they break the rules. Without that structure, people fall in and out of the job because they fundamentally lack the structure needed to help them keep the job. It’s such a waste to lose good PAs because they don’t know when they’ll be paid or they want more predictable hours, and it’s so avoidable. Putting the effort into structure pays back in ease of managing and keeping PAs

  5. Feedback – picture this: a PA is late. You say nothing. Next week they’re late a couple of times, and you mention in passing that you’d prefer them to be on time. A month down the line you’re really really hacked off, and you have a go at them. They walk out. They hadn’t had regular, clear feedback, your emotions built to breaking point because you felt like the PA wasn’t hearing you. The challenge here is how you communicate when there isn’t a problem, because that shapes how you’ll communicate when there is one. If you hold fortnightly or monthly meetings lasting a few minutes, at each meeting give them two compliments and one thing to work on, then revisit those at the next meeting, then the PA is used to feedback. They’re used to being given things to improve on, so when there’s a major issue they’re not surprised suddenly by you raising a problem. If you want to move towards dismissal, there are lots of complicated rules about disciplinary hearings,  but if you just want to document something, you can discuss it with the PA, or write it in a “letter of concern” or “informal warning” (obviously discuss with your insurance company before doing either of these).

Having these elements in place leads to a solid territory from which to work. It means that I am able to manage my PAs effectively and keep them (and me) happy. We all know what’s expected from each other, and the better we know that the more I can get on with my life, knowing my PAs will be there when I need them. This means focussing on living the life I want – whatever that means for me in any moment.

Now read part 2: the freedom to fail

Adaptive Product Reviews – wheelchair edition (phone mount, drinking straw, coffee cup)

……….Excuse me, but what’s the mount attached to your wheelchair called?

Another wheelchair user, stopping me in public

I didn’t anticipate ever spending my time writing product reviews, but I’m very frequently asked about three things I use on a day-to-day basis. These are the Meru Flexzi 2 phone mount (wheelchair users often stop me while out and about to ask about it), the Source Convertube (which the Intensive Care nurses apparently loved), and the Stojo Brooklyn reusable coffee mug (which gets me a lot of questions due to its portable folding nature).

I would love to have found a good coffee cup holder for my chair, but alas I’m still looking for something strong, resilient, and the right size. If you have anything you can recommend me, comment here, or email hale.jamie.r@gmail.com.

Meru Flexzi 2

The Flexzi 2 gadget mount by Meru

The Flexzi 2 made by Meru is a flexible gadget stand, suitable for mounting phones, tablets, switches, kindles, remote controls, and anything else you might want. I use it with the heavy duty clamp, and the extension  kit, you can also buy a quick release camera mount that also sticks to it. The way the flexzi works, is that there is a clamp which you attach to your wheelchair (or bed, table etc), and then two strands of moveable plastic. Each strand is made up of lots of smaller segments, and the two strands can be twisted round each other to increase their stability. At the end, they come together in a large round piece of rough velcro. You then attach soft velcro to whatever you wish to stick to the mount, and it holds it steady.

I’ve used this to support anything from a 2kg laptop down, and whilst I don’t trust it absolutely, I find it very useful. I keep my phone and tablet in otterbox cases for safety, then superglue the velcro to them, and attach that to the mount. I’ve never had the mount’s velcro fail on me. I haven’t tried their camera mount, but it’s designed to stick onto the surface of the flexzi mount, and screw using a universal adapter onto the camera, to stabilise it.

This mount makes it possible for me to message or dictate from my phone as I go, and doesn’t rely on me holding it, which I can’t do without dropping it. I find that the two strands are easy enough to bend for me to position it where I want, but firm enough that they don’t move during the day-to-day use.

The Flexzi 2 allows me to be certain when out and about that my phone will never fall or be dropped. This gives me a degree of independence I wouldn’t otherwise have, as if I drop my phone, I have no hope of picking it back up again. I can’t emphasise enough just how much I love this product.

Source Convertube

The Source Convertube hydration system

The Source Convertube is a drinking system that connects to existing plastic bottles. If you’ve encountered hydration bladders (e.g. camelbak or similar) as used by cyclists, walkers etc, where a bag of fluid is hung in a backpack with an extended straw to drink from it, then you’ve seen the concept. The Convertube has a bite-and-suck valve with a cap and a long tube, but then instead of using a water bladder, it simply connects to most sizes and shapes of water bottle. I tend to buy litre bottles of flavoured sparkling water from the supermarket, fill them with squash, and then use this straw to enable me to drink from them. I wash and reuse the bottles a number of times, then eventually replace them.

I prefer it to using hydration bladders because when the bottle I’m drinking from is empty, we can just unscrew the lid and straw, then screw it into a new bottle, whereas with hydration bladders they were difficult to sort and refill without covering the person doing them in squash. It will also screw onto most bottles of drink as I buy them from the supermarket – so if I want to get a bottle of fruit juice. I find hydration bladders difficult and unwieldy, this is a far more manageable solution for me.

You can then use a safety pin and some fabric or velcro to clip the tube to your shirt, meaning the bite valve is within mouth reach at all times. This means from my wheelchair I then have access to a drink without having to ask a PA, but also without having to be able to comfortably and safely lift the bottle of drink, which is amazing. I was without one of these tubes for a few months recently, and I found that I drank so much less of what I needed as a result. Since buying a new one I’m far better hydrated, without triggering nearly as much of my nausea.

I’ve tried lots of cheaper drinking tubes, but have found that with most of them they required more ability to suck than I could manage, whereas this is a lot easier for me. An honorable mention here goes to this hydration bladder cleaning kit, which has a long enough brush to clean the whole way down the inside of the straw, helping me keep the tube clean.

Stojo Brooklyn coffee cup

The Stojo Biggie, the larger size of Stojo collapsible coffee cup.

I wasn’t sure whether to bother buying the Stojo Brooklyn (one of the Stojo Biggie range – their larger size cup). My nausea means I struggle with drinks – and that’s constantly being balanced against my desire to have more caffeine. However, I decided I couldn’t justify using disposable cups when I did have a coffee, so I was on the lookout for a cup I could easily carry on my chair. I thought I wanted something that would work with a carabiner, but then I saw someone using their Stojo mug and was sold. These coffee cups fold down into themselves, meaning they can be sealed into a small shape and packed into a bag, essential for me, because I don’t know when I’ll next be able to wash it.

The other crucial thing about these is the straw. Made of silicon, it’s wide enough for the inside to be easily cleanable, and while it doesn’t protrude far above the lid of the cup, it can also be used as a channel for a longer straw if necessary.

If you put it down too hard on a surface, especially if the middle cuff isn’t on properly, you run the risk of sending coffee everywhere, so this cup demands caution, but it’s a better balance of usability and portability than I’ve seen in any other cup yet.

How did you find these products? What would you recommend to wheelchair users?

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

NOT DYING: A creative residency

"NOT DYING - a creative residency by Jamie Hale"
A creative residency by Jamie Hale

This autumn I will be running a creative residency at a London theatre, including offering free performance workshops for disabled artists on the themes of DISABLED JOY and WE HAVE ALWAYS BEEN HERE

Easy read version

For several years I’ve been working on a poetry show exploring my journey through the trauma of illness to a resilient survival that draws on the strength of generations of disabled people. This autumn, I am lucky enough to have a week’s residency at a top London theatre for me to develop the show and myself as a performer, and prepare it to be taken on tour in the Spring.

As part of developing my show, I’m keen to reach out to other communities of disabled artists and explore methods of collaborative working that allow us to create performances that exemplify the variety present amongst disabled artists.

One of the ways I will be doing this is by running two free workshops for disabled artists focused on developing performance skills.


Application deadline extended until midnight, 17th September

DISABLED JOY
9th October
14:00-16:00
Theatre space at the Barbican Centre

A performance workshop on the theme of DISABLED JOY, where participants bring existing work that relates to this theme and explore how to perform it on stage. The workshop is free, and places are limited to six. To find out more, or apply for a place, visit DISABLED JOY (easy read version).


Application deadline extended until midnight, 17th September

WE HAVE ALWAYS BEEN HERE
10th October
10:30-12:30
Theatre space at the Barbican Centre

A performance and storytelling workshop called WE HAVE ALWAYS BEEN HERE, which will explore how we can communally create a mythology of disabled people in the past, present, and future. The workshop is also free, and places are again limited to six. To find out more, or apply for a place, visit WE HAVE ALWAYS BEEN HERE (easy read version).


To find out more about how I will process the data of applicants to these workshops, please see the privacy notice

Three things I wish people knew about living with life-threatening impairment

Jamie in black and white, wearing a "PISS ON PITY" t-shirt

One of the hardest things about living with life-threatening impairment is actually not dealing with my situation, but with peoples reactions to my situation. Here are three things I wish people knew about living with life-threatening impairment

People constantly presume how I must feel, and then react to me based on that – when they’ve wildly misunderstood how I might feel. These are three things I want people to know about living with life-threatening impairments and how their reactions to my situation affect me. I want everyone to know that it is more than possible to live a fulfilling, rounded, happy life in my situation, and that often the biggest impediment to me being happy isn’t my impairments, it’s how people react to them.

1. My life is not a tragedy, and I’m glad I was born
When I discuss my situation, I’m always met with a small flood of pity. People think it’s a tragedy that I’m born, and a tragedy that I’m living in this situation. Well, I wouldn’t change it for another one. Who I am has been shaped by living with long-term impairment, and  I can’t imagine changing it to become a different person. I’m not Jamie + impairment – my whole character and being are shaped by my experiences, and thus I can’t say that I wish I didn’t have my condition, because I’d be an entirely different person, and I like who I am.

2. No, I’m not always thinking about death.
The problem with living with death is that it gets very boring indeed. You can’t only think about death. It’s just not that interesting. I’m making long-term plans in my life, including studying, writing, and building a network of adult friends. I’m doing an internship. You might wonder why I’m starting a course that will take four years – I don’t know what the future holds for me. My life expectancy is likely to be normal – unless I get the one infection which finishes me off (and a few of them have had a good go at this). I’m not going to sit on my backside thinking of death and waiting for it. I’m going to get out there, bite the bullet, and get on with life. I’d rather regret things I’d done than things I hadn’t, and if I start on this course and become too ill to finish it – well at least I learned something.

3. If you were in my situation you probably wouldn’t kill yourself either.
I get told all the time that people think if they were in my situation they’d kill themselves. I understand that, because I understand the terror of uncertainty, but let’s be honest. In reality, you probably wouldn’t.

When you’re telling me this, you are saying that it would be better for myself and the wider world were I to be dead, You’re telling me that you think my life is so miserable as to be better if it wasn’t happening. You preclude any space for me to assert that my life is good and valuable (even if I face challenges). You make my theoretical suicide into something socially acceptable. Rather than turning round and offering me support to make my life worth living, you tell me that because I am disabled my suicide would be reasonable. Normal. Understandable.

This makes my life worth less than anyone else’s. It says structurally that you believe no resources should be put in place to prevent my suicide. At a time when disabled people have an unemployment rate 30% lower than non-disabled people my survival is less valuable to you than yours. At a time when we are twice as likely to be in food poverty, our work is undervalued to the point that where we can get jobs at all, we earn 15p less per pound than non-disabled people. At a time when we are more than twice as likely to experience every type  of sexual and non-sexual abuse than non-disabled people, and disabled women are twice as likely to have experienced sexual assault in the last twelve months as non-disabled women you think I would be better off dead. Telling me preventing my suicide should not be a priority is just another piece of evidence that I am living in a world which does not want people like me to thrive.

Before you open your mouth, have a think about what the effect of hearing what you’re saying might have. Consider whether you’re replicating a world-view in which disabled lives are worth less than non-disabled lives. Consider whether you’re implying that we can’t live whole, rounded, and happy lives. I don’t want another stranger to tell me how miserable the situation I’m in makes them. Instead, tell me that I look sharp, or ask where I got my shoes. You still get to feel good about talking to The Disabled, and I come away from it feeling complimented, rather than feeling like I’ve been told yet again how worthless my life is.

I’m happy. I’m happy where my life is and I’m happy with where it’s going. Onwards and upwards.