A space for grief (part 2): The TAB person's looking-glass

This post follows on from part 1. Glossary note: TAB is an acronym for "temporarily able-bodied" or nondisabled.

Alex observed in a recent conversation that "acceptable" disability looks like the kind of person who can pass as nondisabled given a bare minimum of reasonable adjustments. It's almost always definted by our relationship with work. The disability champions - the people who are seen as having overcome the odds, and thus as "good cripples" - are the wheelchair user who works a desk job; the partially sighted person who uses screen-reading software; the D/deaf person who can lipread and get by with minimal sign-language communication from their colleagues. The people who, aside from a few visible deviations from the norm, function more or less the same way as any TAB person would.

I would hope that in 2015 this doesn't need to be said, but here it is anyway: the majority of disabled people cannot function the way a nondisabled person can. This doesn't mean we're not capable. What it means is that the TAB people around us need to take a long, hard look at how they define capability, and how they define reasonable adjustment. I can't masquerade as a nondisabled person. I can only walk very short distances without my stick, on the days where I can walk at all. I can't always focus. I can't disguise my wincing, or the sharp intake of breath when I shift slightly in my seat and something dislocates. And what's more, I shouldn't have to. Pain is a part of the human experience, and acknowledging it benefits everyone, not just people with disabilities.

Whoever came up with the phrase "differently abled", while almost certainly well meaning, missed the mark. For the most part, we're not differently abled at all - there are just obvious barriers to us doing the same things in more or less the same ways as an able-bodied/neurotypical person. And as often as not, that barrier exists in the mind of the assessor.

"That person is using a wheelchair, and therefore they must not be able to walk at all."

"That person cannot hear me talking, and they are therefore unsuited to a working environment in which lots of meetings take place."

"This person is visibly disabled, and therefore they must not be able to properly perform the task I'm asking them to do."

"This person has a learning disability, and therefore they will never understand what I'm trying to tell them."

Some variation on one of these phrases will surely have crossed everyone's mind at some time or another, to the point where many of those who have disabilities have come to say them about ourselves. For a nondisabled person, the ultimate response that results from this kind of thinking will be one of horror or pity.

In my last post, I mentioned that I was in the process of acquiring a wheelchair. I have now been using my wheelchair for a week, and the way people respond to me has noticeably changed. Horror, pity, suspicion. The people who won't meet my eye because they can't bear to look at this young person using a mobility aid. The undoubtedly well-meant but somewhat infantilising offers of help. The woman who, on seeing me stand up and push my wheelchair up a ramp I was finding too steep to propel myself on, aggressively confronted me whilst an entire busload of people sat in silence. The people who talk over my head and address my partner or friend instead of me.

Horror and pity reduce a disabled person to an object; a two-dimensional thing with no agency and no value above what's imposed from outside. These emotions run counter to a normal, healthy grieving process, both for the disabled person experiencing it and for those around them who may also be grieving. Pity is not compassion or empathy. There is nothing constructive in it. It is a defence mechanism - a means by which the observer can distance themselves from the object of their concern, rather than engage with the person and what they are feeling. Horror needs no explanation - it is, as we know, following the instinct to recoil from something perceived as strange and frightening. People do not like to gaze for long into a mirror of possibilities that include ours.

When these are the reactions we encounter the majority of the time, we begin to predict. When the incident on the bus happened, my first instinct was that I should avoid leaving the house until I am capable of manually propelling my wheelchair well enough that I can adequately perform disability in public. 98% of wheelchair users can walk a little way, but enough of us have encountered this kind of aggressive questioning that we have learned, over time, that we must conform to others' models of disability in order to be allowed to get on. If we encounter pity enough of the time, we will expect to encounter it constantly, and we will come to conclude that we are pitiable figures. If we encounter horror enough of the time, we will come to conclude that we are monsters.

You will not look into our mirrors, but yours are forced upon us every hour of every day. And so, we grieve, not just for ourselves, but for the images we must project in order to be considered worthy. We mourn those discrepancies, and we resent the need to hide our grief simply so that others will think us more useful and valuable. When the mirror you show us displays a sad creature capable of recreating a mere shadow of the human experience, that is what we are afraid we will become.

And that's why horror and pity are no use to us. We can't eat them or use them for shelter. They are not a currency that's accepted in exchange for goods and services, no matter what the government's propaganda machine would have you believe. They hold us back. We are already complete human beings, and we should not have to grieve for your opinion as well as our health.

Equality is not giving everyone the same tools to achieve an end: it is giving everyone the means with which to attain the same result. If people were to put aside their horror and their pity for long enough, and make the effort to see life through a disabled person's lens - which, in practice, means believing what they say and acknowledging the validity of their thoughts, feelings and experiences - the grieving process would be less painful and end its first cycles sooner.

A space for grief (part 1)

There exists a societal expectation that people with disabilities should suffer "nobly". In practice, this means we should discuss illness with a rictus grin and manufactured enthusiasm for the things we can! still!! do!!! or (preferably) not talk about it at all. This stance is equally reflected in the UK's "pull yourself together, man" attitude to mental illness. As a community, we do what we can to mitigate this thought process, but many of us have quite understandably internalised it. In this post, I am going to discuss grief, a subject the disabled community is largely silent about.

Many of you will be familiar with Elizabeth Kübler-Ross's five stages of grief, namely: denial, anger, bargaining, depression, and acceptance. It's worth remembering that, as Kübler-Ross herself states, in practice, some people will experience these stages "out of sequence", or find that some recur or don't happen. Personally, I have often found that grief is cyclical. How often do we grieve a single loss of one concrete thing? I'd suggest this happens comparatively rarely; instead, many individual incidents will cause micro-cycles of the whole process. Grief rarely ends at the first acceptance.

My own condition has recently deteriorated to the point where I am requesting a wheelchair, which I expect to use around 30% of the time. I currently walk with a stick, but due to nerve pain, weakness in my core muscles, and my increasingly frequent dizzy spells, I can only sustain this for so long. Getting a wheelchair will be a positive step - it will enable me to do so many things I thought I'd lost forever - but there is grief for the loss of normality, and for the things I will have to leave behind.

It was my friend Alex who first suggested that I might want to look into getting a wheelchair. Alex has written very eloquently about navigating healthcare services as a part time wheelchair user, and is a keen advocate for those who share some or all of their experience. At the time, I brushed the suggestion off. I was still walking just fine, right? Sure, it hurt, and it was tiring, but it couldn't be that much worse than what an average person experiences, surely? (Side note: I only recently became aware that most people aren't in pain 100% of the time, and I'm still reeling from the realisation.)

The turning point was the day I had my first singing lesson in several months. Singing is very physically intensive. It requires excellent posture and core strength, careful control of the jaw, vocal apparatus, and abdominal muscles, and (in a lot of cases) standing up. After 90 minutes, give or take, I am very tired. By the time I had walked the ten minutes to the nearest bus stop to my teacher's house, I was completely exhausted. I got home, slept for three hours, and took a further 24 to fully recover. As I lay in bed, a coherent thought registered in my fatigue-addled brain: maybe, if I hadn't had to walk, I might still have had some energy to get on with the rest of my day.

If it had just been that one isolated incident, I expect I'd have brushed the idea off again, but this time it stuck. I remembered other times when the kind of A to B travel that many people consider routine have completely wiped out my energy; I thought of the pain I experience on public transport and the anxiety I face whenever I have to go out. And the same kind of thing keeps happening.

Have I been angry? Of course I have. I've been angry with doctors throughout my life who haven't given me a fair hearing; with specialists who could have diagnosed me but didn't; with myself for not trying harder to "just get on with it"; with all kinds of other people and institutions in all kinds of situations. Have I bargained? Sure. Maybe, after all, if I just get another physio to see me, or I get another referral to somewhere else, they'll tell me how to fix it and I can be normal.

As you can imagine, this kind of thinking takes its toll after a while, and depression is almost inevitable - not least when, like me, you have a mental illness to help you on your way. These few months of rapid decline have been tough on my loved ones and hell for me.

I'm not looking for sympathy here, and I won't accept your pity. It is what it is, and I'm going to get on with my life as best I can. But if someone in your life is going through something similar and needs to talk about it, let them talk. Grief is real, and it is valid, and we need to make spaces - both within the disabled community and outside it - where it is safe to grieve what we're losing. Only then can we work with the things we have.

I am a disabled musician.

When I'm not grumbling on the Internet or attending a plethora of medical appointments to discuss all the ways in which I am a mutant, I'm also a musician. I sing (solo and in choirs), I play the piano, and I "play" the guitar. These are the things that give me the greatest pleasure in life. I make music in a variety of styles, from folk to classical to punk, and I consume live music whenever I can.

Making music with EDS is not without its challenges, many of which I've only recently recognised and begun to navigate. First, and perhaps most obviously, I can't stand up for long periods of time. I persevered with it until early last year, when I had to leave a gig I'd been really looking forward to because I was in so much pain. Choral concerts are agony - in April, my choir did three concerts in three weeks, and it took me almost three more to fully recover. The other day, I had to leave rehearsals earlier when the weak muscles in my lower back refused to support the weight of my upper body. My solo efforts as a classical singer have been put on hold.

There's also the not inconsiderable problem that my fingers dislocate - most noticeably the pinky finger of my left hand, which has subluxed consistently since I was a child and baffled all of my piano teachers. More recently, my fingers and wrists have become more unstable and painful, and in combination with the need to sit upright in order to play, my music practice has been substantially limited.

In autumn/winter 2009, I was a member of a choir that required all black as concert attire. In a church, this is generally not a problem, but in a concert hall with strong lights pointing at the stage, where you're surrounded by 49 people who are also wearing black, you start to swelter pretty quickly. For large scale choral works, you also spend a lot of time sitting or standing very still. This meant that I ended quite a few concerts not singing and instead concentrating very hard on staying conscious. I changed my concert dress slightly and thought nothing of it for a while until last year, when the blackouts started coming back and my amazing fount-of-information friend suggested I might have some manner of autonomic dysfunction. If you attend one of my choral concerts and notice that I'm swaying, frowning, and not singing, you'll know I'm about to pass out.

It's not all doom and gloom. I'm certainly not about to give these things up, because my life would essentially be pointless without them. But thanks to renewed input from friends and clinicians, I'm starting to make and ask for adjustments that will hopefully get me back up to the standard I have always aspired to. My current singing teacher is also a yoga teacher, an anatomist, and I suspect that she may also spend evenings wearing a cape and fighting crime, and she's helping me build a practice regime that will strengthen my core as well as developing my technique. My choir have been very supportive in allowing me to stretch at intervals during rehearsals, leave early if the pain gets too bad, and look into acquiring a high chair I can use for concerts. I've got myself some finger splints, and I'm hoping they'll help me practice without pain until I've found out how to strengthen my fingers.

None of these are things I'd have discovered without input from peers, or some degree of research or initiative on my part. What I'd most like to see in music teaching as time goes on is a greater drive to increase access on the part of teachers and professional musicians to make music accessible and to make disabled musicians visible. Fortunately, there are people and organisations working on this right now, and I'd like to take this opportunity to give a shout out to Drake Music, who do incredible work researching and creating assistive technology, as well as providing sessions for disabled musicians and outreach sessions for musicians, friends, families and teachers who might want to help their relatives, friends or peers to play.

I'd love to hear from other musicians whose playing is impacted by EDS, and of course from people who are doing education and outreach work in the UK and beyond. Comment here, or tweet me @theviciouspixie, and let's chat. Tell me about your projects!

Getting up is hard to do

Here's a fun fact about me: every morning, without fail, I will wake up to find that one or both of my shoulders has partially dislocated.

When I tell someone this for the first time, I tend to experience one of three reactions. There's grim recognition from fellow bendy people; horror and wincing from my able-bodied friends; and a confused look of "I thought that was normal" from people I then advise to ask for a rheumatology referral from their GP.

The idea that not everyone wakes up in a certain amount of pain is a relatively new one for me. Because it's been happening to me for at least nine years, I'd assumed that this was normal for everyone to some degree - that everyone woke up and had to immediately readjust their shoulders, hips, and several vertebrae. Imagine my shock when I found out that some people can just roll out of bed and get on with their day!

I had long imagined that the world was divided into Morning People and Night Owls, and that the two would never understand each other. I thought that morning people probably practised some form of black magic, because mornings for me are impossible. To begin with, I can't remember the last time I slept through the night and woke up feeling refreshed. Between physical pain and the chronic anxiety that tends to soak into my dreaming subconscious, I wake up every few hours, gaze despairingly at the clock, and hope vainly that the next time I look at it will be when my alarm goes off. When my alarm does sound, I will very often fall asleep again the moment I press the off switch, because I'm still exhausted.

Once I eventually wake up, which can be up to four or five hours later if it's been a really bad night, I have a brief and blessed window before the pain kicks in. I'll spend about ten minutes gingerly testing all my various joints and limbs to see what's fallen out, and stretching any painful muscles, and then I'll try to get out of bed. This can take several attempts, because often my hips will pop out as I move to put my feet on the floor, or I'll see stars as I straighten up and have to sit or lie down again. The whole process of getting out of bed generally takes upwards of 45 minutes, and it's very difficult to accurately factor it into my plans for the day.

As an added bonus, it can take up to two hours after getting up before I can keep any food down. And I can't string a coherent sentence together until I've had two cups of tea, but I'm given to understand this is a rather more common experience.

So next time someone tells you they're not a morning person, hang onto your comments. They might just be a bit slow to start, but they might equally be going through something like this.

How I got my diagnosis

Stop me if you've heard this one before. A person goes to their GP and says "Doctor, doctor, I think I have Ehlers-Danlos Syndrome!"

In an ideal world, this would start off a chain of referrals to various specialists who would help that person to treat the various aspects of ther condition that are causing them trouble. This is not an ideal world, though, so the punchline will usually be the doctor looking confused and asking you what you're talking about, or denying the existence of the condition and/or your symptoms.

I can't judge GPs too harshly. They're not trained to deal holistically with one condition with a diverse spectrum of symptoms; they're trained to deal with one problem at a time, and by and large they're doing their best with the tools they have. If you're lucky, your GP will have the time and the energy to research EDS and make some informed decisions with you about how best to proceed. More often, however, GPs are stretched for time and will make it Not Their Problem as quickly as they can. This is immensely frustrating to us as patients, especially when our problems are dismissed out of hand.

My diagnosis of EDS arrived with basically no input from GPs at all. The first I knew about it - despite presenting with symptoms at various points in my childhood and teenage years - was in the winter of 2010, when the mother of my then boyfriend observed that my middle fingers are crooked. They’re the kind of shape you’d normally associate with arthritis caused by a repetitive movement like knitting, but here they were on someone young and arthritis free.

My right hand, complete with askew middle finger.

A physiotherapist, she proceeded to ask me a number of questions about my history, and finally she challenged me to touch my thumb to my forearm, as in figure 2 below:

Taken from www.physio-pedia.com. And yes, I can do all that other stuff as well, in case you were wondering.

On doing this, she told me I might be hypermobile. I had no idea what that meant, so I thought nothing much of it until some months later. I was at a party in a field, celebrating the birthdays of two friends. A shout went up for help dismantling the tents, and the person next to me mentioned that they had hypermobility and couldn’t join in. “Oh, hey,” I said, “I have that too!”

My new acquaintance, it turns out, participated in some clinical trials relating to the condition. As a result, they know basically everything there is to know about it. They told me to talk to my GP and ask for a referral to the hypermobility clinic at UCLH, which is a centre of excellence in research and houses most of the few specialists active in the UK.

Despite being fortunate enough to live in London (making it more likely that I'd be referred to the right place), it took me a year to summon up the courage to ask for a referral. My GP at the time wasn’t terribly sympathetic, but grudgingly agreed to “exaggerate my symptoms” and send the referral in. A few months later, I was seen and given a formal diagnosis of Ehlers-Danlos Syndrome.

Three years later, this person and I are firm friends, and they still have a wealth of advice to give me about how to manage my condition. When my dizziness and blackouts returned after a three-year absence, they told me what they were and how to take care of myself. When I reported gut symptoms, they gave me advice on tracking my diet. Since I’ve known them, they’ve given me tips on everything from exercise to how to talk to doctors. We’ve shared joy at each other’s good days and frustrations at our setbacks, and I couldn’t put a value on their friendship.

Community has been key in my EDS experience so far. I’ve passed on the advice my friend has given me, and a little group of supportive friends has formed around me. Symptoms like fatigue, brain fog, chronic pain, anxiety and depression can be incredibly isolating, and so the Internet has also been vital, connecting me to people - often total strangers - who understand what I’m going through and can throw me a lifeline when I’m struggling. Community is often there when doctors dismiss us or won’t see the complete picture of our symptoms. It’s there when oppression comes at us from all sides of the political sphere. We have each other, and we’re holding tight.

To all my friends, on and offline, this one’s for you. You all rock.

We Can't March

As an indeterminate number of protesters took to the streets on May 9th (the precise figure apparently depends on how right-wing the paper you're reading is), disabled activists took to Twitter under the hashtag #WeCantMarch to make their voices heard. The hashtag was started by Twitter user @hnahhnah, who is organising further actions with other activists, and others.

Tory austerity measures have been particularly harsh on vulnerable groups, with disabled people bearing the brunt of an onslaught of cuts to social welfare. It's harder than ever for many of us to access the financial support we need in order to survive. Those of us who have suffered - some disproportionately - under the Conservative-led government may want to show our opposition in some way, but the standard method of attending rallies is inaccessible to many of us for all sorts of reasons.

How does EDS prevent me, personally, from attending marches?

- I can't walk the kinds of distances usually covered by protest rallies.

- I can't remain on my feet for longer than about 10 minutes without severe pain.
- Were I to use a wheelchair on a march, I would risk being tipped out of it.

- If I am kettled, I will not be allowed to take the measures - sitting, lying down, stretching - that will keep my pain levels at least bearable.

- If I fall while marching I am at disproportionate risk of injury, either by being trampled or by being helped to my feet (thanks to joint laxity in my elbows, wrists, and shoulders).

- If I am arrested, I risk injury when being manhandled by police and may be denied access to essential medication. This might sound like an exaggeration, but it's happened to a lot of people.

- If I am injured in a kettle, I may be denied access to medical treatment.

- Large crowds carry a disproportionate risk of personal injury and excessive amounts of stimulus, which in turn gives me panic attacks.

- If I do attend a march and nothing bad happens, it will still take me at least two days to recover to the point where I can do basic daily tasks again.

Does this mean people with EDS and other disabilities should be locked out of protest, when austerity measures are causing us so much suffering? Of course not. And this is why #WeCantMarch is so important. We can't march, but we can organise. We can help produce information pamphlets and make signs. We can provide food and water for protesters, and catering for after marches. We can provide telephone and Internet based support to arrestees. We can lobby the media to provide honest, unbiased, and accurate coverage of rallies. We can boost your voices while adding our own. The hashtag lists a wealth of other ways in which we can support people at rallies 

I have these words on this page. I cannot march, but I can still shout. Let me in. If you're organising, take some time to think about how you can include people who can't march - not just people with disabilities, but people who are at greater risk of violence (such as ethnic minorities, immigrants awaiting asylum decisions, and people who are visibly queer or trans), and people who can't afford to travel to major cities, and people whose caring obligations or professions take priority over risking arrest, and countless others too.

We'll be over here, organising and doing what we can. Join us, and let us join you.

Recommended reading:
Caroline Lucas writes in the Independent about the likely impact of cuts to the Independent Living Fund.
[Trigger warning - suicide] Investigations of suicides linked to benefit sanctions are ongoing.
Report on the case of David Clapson, who was found dead in his home after benefits sanctions.
[Trigger warning - suicide] Black Triangle lists benefit claimants who died after sanctions between February and October 2014.

I welcome suggestions for other resources, particularly on barriers to protest for people who are nondisabled but belong to other vulnerable groups. Comment, or tweet me @theviciouspixie, and let's get a conversation going.

EDS Awareness Month

As many of my followers know, I live with Joint Hypermobility Syndrome, or Ehlers-Danlos Syndrome (hypermobility type). As many as 1 in 20 people have some form of hypermobility - if you were double-jointed as a child, or you used to be really good at ballet or gymnastics, that's you - but for a minority of us, this becomes a disabling illness later on in life. The laxity of our joints leads to frequent dislocations (or partial dislocations, known as subluxations), near constant muscle pain, low energy, and fatigue. Many of us need to walk using a stick or crutches, or to use a wheelchair all or part of the time.

EDS is primarily a disorder of the collagen, meaning that it can also affect the digestive, circulatory, urinary, and autonomic nervous systems. This produces a laundry list of painful and debilitating symptoms and partner illnesses. EDS has also been linked to dyspraxia and a number of autistic spectrum conditions, as well as fibromyalgia and chronic fatigue syndrome. Between the pain, the frustration, and the stigma we face as people with visible or invisible disabilities, many of us also live with mood disorders or other forms of mental illness.

May is EDS Awareness Month, so I'll be making an effort to revive this blog to talk a little about it. I write this post just after a UK general election where the Conservative Party - who have made no secret of their contempt and hostility towards people with disabilities - have won a parliamentary majority. I write in the face of fear and dread for the future, knowing that many people out there would gloat at the discomfort, disbelief, pain and stigma I, along with hundreds of thousands of others like me, face on a daily basis. But these words on this page are one of the few ways I can fight ignorance and prejudice, and maybe a few people will read them and take them to heart. So here we are.

Welcome, friends. It's going to be a bumpy ride, so get as comfortable as you can.