Government Finally Reveals That More Than 4,000 Died Within Six Weeks Of Being Deemed ‘Fit For Work’ (post by Kitty S Jones)

via Government Finally Reveals That More Than 4,000 Died Within Six Weeks Of Being Deemed ‘Fit For Work’

In my experience, and considering the usual newspaper articles about ‘benefit cheats’ and ‘scroungers’, most people think that the UK benefit system is pretty lax and a lot of people are exploiting it in some way. This post presents a starkly different reality, and shocking statistics even for those accustomed to hearing about how painful experiences of the benefit system can be for disabled people.

Managing chronic pain: tips you won’t find elsewhere

Since developing chronic pain, I’ve been surprised by the general unhelpful nature of information out there. My friends and family thought doctors would solve everything, but to be honest they didn’t do much to help me, and physio didn’t work for me either. I’ve written this post to share some of the things that really did work for me, and that I wish I’d thought of trying sooner. Don’t worry, none of it involves some weird snakeskin oil on Amazon or anything like that ‒ it’s all quite general stuff and best of all, it won’t cost you anything or take a large amount of time!

And no, I’m not going to do the usual and suggest you eat well, exercise and try to get a good night’s sleep.

Typical advice for managing pain can sometimes be quite depressing for those who have tried the suggestions already and not found them possible or helpful. So, time for some new ideas!

Analyse

I first began properly analysing on the advice of a speech therapist. She wanted me to map out the times of day when using my voice was painful and to note whether various things had positive, neutral or negative effects on it. Through this analysis, I discovered that steam inhalation helped, as did gargling, certain reflux medications and voice relaxation techniques, while other things didn’t help.

I continued this investigative approach for some time, playing around with the times I took medication (with my doctor’s approval) and the times I did inhalation and voice exercises. In particular, gargling and taking Gaviscon before making a phone call really helped, as did spreading out my reflux medications across the day and not talking in the morning until I’d done an inhalation and had a cup of tea to warm and moisten my vocal cords.

To get started, I’d advise you make a chart with each hour of the day down one side and all the things you can think of that might influence your pain levels down the other. Then note in each box when you’ve done something and what your pain level was. This will help you find trends.

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It feels a bit neurotic, but you can learn a great deal from making a chart to track your activities, meds and pain levels. You can also use one, after the analysis phase, to keep track of your daily targets and encourage pacing. 

When I did this with the leg pain I experience, I discovered that doing things earlier in the day and resting in the evening allowed my leg pain to ease off before bed – since pain when trying to sleep was the biggest issue for me, this was a great discovery.

If you have a chart like this, you can also use it to monitor the effects of medication changes or changes in physio exercises, and so on. You can note your pain levels out of 10 if you find that useful, or just describe it. By doing this, I’ve been able to clearly evaluate the effects of various insoles and changes to my routines.

There is a possibility that your pain is truly random, but you won’t know unless you investigate it.

Find your limits and decide when to be flexible with them

Once you are taking note of your pain levels and activity levels, you can more easily manage your pain. Of course, in some instances you will not have control over triggers e.g. work or childcare responsibilities. Some things you won’t be able to change. But you may still discover or think of adaptations that could help you at work or when caring for kids, such as ways not to do so much lifting (e.g. take files out of a box and lift individually rather than lifting the whole box) or ways to rearrange your time (e.g. taking kids to the park in the morning rather than afternoon).

Once you have done your best to arrange your medications and carry out activities in the optimal way, you can think about spreading your activities out over the day or week. For example, maybe you can do half an hour of cleaning daily rather than doing it all at once on Wednesdays. The usefulness of setting limits and spreading things out is that it may get you out of that boom and bust cycle where you constantly do a lot, get lots of pain and have to rest, then do a lot again… For some people, this will be unavoidable due to inflexible commitments but for many it will be possible to exert some control. While it can be annoying to have limits on how much you can do, it can also be amazing to have fairly stable pain levels and less unpredictability. You won’t need to cancel plans so much (if at all) and you may be able to stop using ‘flare-up meds’. Your friends, colleagues and family can also get some certainty regarding how much you can do.

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Pain management can be quite a fun-buster so sometimes you’ll probably want to be flexible and accept you’ll need a day or two off afterwards. Photo by Angelo Pantazis on Unsplash. 

You might also like to consider when you will be prepared to go beyond your limits and accept that you will have some flare up afterwards e.g. for friends’ birthdays, weddings, a favourite hobby, a work training day etc. If possible, you can then plan to take it easy on the following day(s), or take extra medication.

There is a risk your life will become less spontaneous and fun if you follow your limits strictly: it’s up to you to weigh up the pros and cons of such an approach.

Focus on pain-free parts of the body

This technique is really obvious in a way but it doesn’t crop up in many places. In fact, many will advise you to investigate the pain. This has some advantages e.g. you may realise it’s not as bad as you thought and you may be able to observe it in a less emotional way, even noticing there are some pleasurable aspects to it, such as some warmth or tingling. However, what has really helped me is focusing on pain-free parts of the body. Our mind tends to zoom in on pain. It wants us to be fully aware it’s there, presumably to encourage us to try to stop it. However, with chronic pain this focusing is useless and unpleasant. Keep taking your mind to a different body part, if you have something that’s pain free. It can even be a bit of a surprise to remember it’s not actually you’re whole body that’s in pain! And this may even help reduce the tendency of strengthened neural pathways to form between the painful body part and your brain.

An alternative version of this is imagining a soothing sensation filling the area where you have pain.

And finally…

Check out my post on how to prepare for a physio/hydro appointment, if appropriate

Remember that you are a hero, even if no one but you knows it. Living with pain is super hard and many people will not understand that but congratulate yourself every day for soldiering on.

Treat yourself with love and compassion when you accidentally go beyond your limits. We all do it, regularly, and you shouldn’t blame yourself. Learn to let go.

Cast off the ignorant remarks of ignorant people. Life’s too short. Seek support in those who understand, and try to educate people when you get the chance (see my post on the taboo of chronic pain).

Have you tried any of these tips? Or do you have some of your own? Comment below!

Warrior-fighting-dragons
This is you! Keep going 🙂 And don’t let anyone make you feel inadequate.  Pixabay image. 

Related links

Managing chronic pain:

Useful strategies, such as shifting your focus:

http://www.spine-health.com/conditions/chronic-pain/11-chronic-pain-control-techniques

A free meditation:

https://www.meditainment.com/pain-management-meditation

My favourite chronic pain bloggers, who have useful coping tips and strategies:

http://princessinthetower.org/

https://www.psychologytoday.com/gb/blog/turning-straw-gold

 

The Tampa Scale needs amendment

There is a questionnaire used to supposedly identify ‘fear of movement’ called the Tampa Scale. While I would certainly agree that it is worth identifying which patients have wrong beliefs about their condition and the effects of exercise, I also have serious concerns over some of the elements of this questionnaire. It just doesn’t seem like a rational questionnaire, and yet is very widely used and, it seems, rarely questioned.

I’m going to start with my suggested alternative, then go over the items on the original Tampa scale that I think are not going to help identify mistaken beliefs that could be causing a patient to avoid exercise and activity.

Suggested alternative to the Tampa Scale (for identifying mistaken beliefs − obviously some are true and some untrue as in the original):

 

1. I need to move as little as possible to avoid injury 1 2 3 4
2. Just because something aggravates my pain that usually does not mean it is dangerous 1 2 3 4
3. Sometimes it is a good idea to exercise even though it’s painful 1 2 3 4
4. When people with pain gradually increase their level of activity, they often don’t experience increased pain 1 2 3 4
5. Although my condition is painful, I would probably be healthier if I were more physically active 1 2 3 4
6. Even though something is causing me a bit of pain, I don’t think it’s actually dangerous 1 2 3 4
7. Some people with chronic pain find that exercise reduces their pain levels 1 2 3 4
8. If I exercise less, I’ll get weaker and am then likely to experience more pain 1 2 3 4
9. Worries about injury put me off exercising 1 2 3 4
10. Pain always means I have injured my body 1 2 3 4
11. Pain always means I have injured my body 1 2 3 4
12. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening 1 2 3 4

Now for my analysis of the original

The ones that make sense (ish):

3. My body is telling me I have something dangerously wrong. (I suppose ‘dangerously’ suggests an element of dramatization if the problem is not life-threatening etc… though surely more a sign of ‘catastrophising’ than movement avoidance?)

Similar to: 11. I wouldn’t have this much pain if there weren’t something potentially dangerous going on in my body.

 

7. Pain always means I have injured my body.

(Probably the most useful one in my view, as this is definitely false and a harmful view.)

 

8. Just because something aggravates my pain does not mean it is dangerous. (Very similar to number 7. Patients need to be informed this is true, if they are not aware it is. Though I would suggest amending it to ‘Just because something aggravates my pain usually does not mean it is dangerous’ because sometimes pain is a sign of danger, obviously! Pain can warn us we are about to tear or break something.)

 

10. Simply being careful that I do not make any unnecessary movements is the safest thing I can do to prevent my pain from worsening. (Does sound a bit extreme, and shows lack of awareness that inactivity may increase pain long-term.)

Related to: 17. No one should have to exercise when he/she is in pain. (Quite moralistic but I suppose passible. ‘Sometimes it is a good idea to exercise even though it’s painful’ would be better.)

 

14. It’s really not safe for a person with a condition like mine to be physically active. (Probably a wrong belief in most cases where the questionnaire would be used, so fair enough.)

The ones that are problematic either in general or for some conditions (such as Ehlers Danlos):

2. If I were to try to overcome it, my pain would increase. (Sounds like an unhealthy battle that might well happen that way! Pacing and acceptance of pain are surely more accepted approaches? How about ‘Gradually increasing my level of activity often doesn’t lead to increased pain’?)

 

5. People aren’t taking my medical condition seriously enough. (No comment needed surely?! Whoever thought that was a sensible one?)

 

4. My pain would probably be relieved if I were to exercise. (For many people this won’t be true, so strongly disagreeing is the rational option.)

The same goes for: 12. Although my condition is painful, I would be better off if I were physically active. (What does ‘better off’ mean? Why not say ‘healthier’? That would be true in more cases. Being physically active – another subjective term  – might make some people less happy due to the increased pain and fatigue and so ‘better off’ might not feel appropriate to them.)

 

6. My accident has put my body at risk for the rest of my life. (Ambiguous. Surely accidents do create a greater risk of re-injury in many cases? Or does it mean at risk of death, which probably would be a wrong belief?)

See also: 1. I’m afraid that I might injure myself if I exercise. (In some cases this might be highly unlikely, in other cases quite likely e.g. if you have EDS and are prone to dislocations and sprains, even during very mild exercise).

The same applies to: 9. I am afraid that I might injure myself accidentally.

A related one is: 13. Pain lets me know when to stop exercising so that I don’t injure myself. (Again, is this really unreasonable in all cases? Since when was completely ignoring pain a good idea?)

And: 15. I can’t do all the things normal people do because it’s too easy for me to get injured. (People with EDS are generally advised to avoid contact sports, for example, so again this is not going to be unreasonable in all cases.)

Also: 16. Even though something is causing me a lot of pain, I don’t think it’s actually dangerous. (Are we really advocating that people do things that cause a lot of pain? I’ve generally not been advised to do that, and indeed if something does cause a lot of pain that could be a sign you are about to or have injured yourself.)

 

Are you a medical practitioner or patient? I’d love to hear your views!

Do also check out my post on re-examining the concept of kinesiophobia in chronic pain patients.

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Do you think my scale is a better one for identifying when patients are being inactive due to wrong beliefs? Comment below! Photo by Kinga Cichewicz on Unsplash.

 

Re-examining ‘fear of movement’ (kinesiophobia) in those with chronic pain

 

(This post is especially relevant to doctors and physiotherapists and others who work with those in chronic pain)

What many physiotherapists and doctors don’t understand about chronic pain

In medical jargon there is the expression kinesiophobia, ‘fear of movement’. I’ve always found this an odd concept. It is said that many chronic pain patients experience a fear of movement because of associating movement with pain. So, the assumption is that they fear pain. Those with chronic pain are, by definition, those who live with the most pain. It doesn’t seem natural to me to talk of fearing something that is already a major part of your life. If you wear a suit to work every day – you may dislike it, sure, but you wouldn’t fear it, would you? You might wear it only when obliged to do so, and wear super-casual clothes the rest of the time i.e. you may well limit your exposure to it, but fearing it would be unusual.

Chronic pain is something only those who experience it can truly understand. It isn’t accurate to think ‘well, I know what pain is, so chronic pain is just having that a lot of the time’ (which those without chronic pain tend to think either sounds awful or not too bad at all). Prior to getting chronic pain I regularly played full-contact rugby. I loved it. I loved tackling people. I didn’t mind the bloody lip, the bruises and feeling a bit battered. Doing this once a week was, however, NOT a taste of chronic pain in any way. Nor was ju-jitsu, or taekwondo, or boxing. Nor was period pain, or toothache, or a headache. The relentlessness (and total pointlessness of the pain) is not possible to imagine until it happens to you.

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Just because you’ve experienced pain, it doesn’t mean you know what chronic pain is like. (Photograph by Quino Al on Unsplash)

Imagine you enjoy sitting out in the garden when it’s sunny. One day it’s raining and someone asks you why you’re not sitting in the garden. Er, duh. It’s not much fun in the rain. Do you fear rain? No, it’s just not enjoyable sitting out when it’s raining. So why do some medical professionals really have a problem understanding that people’s preferences change when they live with chronic pain? If anyone wants me to live like I did prior to chronic pain, I want them to sit out in the rain, and enjoy it.

Movement avoidance isn’t necessarily due to fear of harm either

Now imagine you’re someone who enjoys going on walks and also reading. Imagine that you have the option to either read for a while or go for a walk while someone repeatedly stabs you in the neck with a fork, and you can’t stop them. I think I can guess what you’d choose. And what if someone tells you that, although the fork stabbing might be unpleasant, it’s not harmful. You’re still choosing reading, right?

Now what do you think about patients who avoid some pain-inducing activities, choosing to do something else instead?

Only when someone tells you that if you don’t choose the walk you’ll get unfit and get stabbed with a fork during even more activities would you reconsider.

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People need to be given a clear and meaningful reason to do a painful activity, otherwise it just won’t appeal. It sounds simple, but seems to get forgotten.

 

A common belief is that patients avoid movement because they believe pain signifies damage to the body. Well, I’m sure some people do, and it’s certainly right to point out that pain can be completely meaningless and unhelpful, as is often the case with chronic pain.

But that’s not necessarily going to make someone start being as active as they used to be, because some activities are just not appealing any more, or not as appealing as pain-free options. I get headaches watching films, so don’t do it as often as I used to, but have gained a great love for podcasts and audiobooks. I’m not scared of the pain watching a film brings on… I’d just rather do something else.

Of course, what really is an issue and what patients do need to know is that if they avoid all physical activity, they’ll lose muscle tone and may experience more pain in the long run. Knowing this will potentially reduce ‘movement avoidance’ in patients who are motivated by long-term goals; perhaps not so much others.

Also, I’ve come across a few things recently suggesting the role of physiotherapists when dealing with chronic pain patients is to get them moving more. Hmm. Well, if that’s what the patient wants, fine. I’m not totally sure, however, that everyone goes to a physiotherapist wanting to be persuaded to sit out in the rain more, or spend more time getting stabbed with a fork, to continue the metaphors.

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I’m doubtful as to whether patients attend physiotherapy in order to be persuaded to do more physical activity despite the pain. (Photo by Christopher Burns on Unsplash)

More exercise doesn’t always mean less pain long term

As far as I’m aware, it has not been proven that people with all types of chronic pain will be able to get back to their previous level of activity if they do it gradually. I’ve really tried, both with sudden increases in activity and the opposite, gradually increasing walking time by just one minute per month. In neither case did my pain levels decrease and in neither case was I able to keep up the increase, as the increased pain interfered too much with my sleep. I recognise that many people may find that doing more activity builds muscle and enables them to do more with less pain: but it can’t be the case for absolutely everyone.

For me and for many others, limiting movement is about keeping pain levels bearable and being able to work, sleep and enjoy life as much as possible. It’s not always about fear or a poor understanding of pain, or even poor motivation levels. It is a way of coping and it is a pain management system. It might be the best option for some of us, and though exercise-loving physios may struggle to understand, life’s not all about physical activity. Since developing chronic pain, I’ve really enjoyed doing more art, writing, reading and listening to the radio. I do what exercise I can each day, ideally a short walk in my area looking at the nice gardens and the wonderful lake, and sometimes chores and a few all-body exercises. Chronic pain sometimes requires adaptation and change, and perhaps medical professionals should take the time to delve a little deeper into why a patient is avoiding some things, what could help them to do it again, and whether they have found any alternatives.

Related links:

 https://stickmancommunications.blogspot.co.uk/2017/01/hypermobility-reluctance-to-exercise.html

 

Don’t focus on my impairment, ask me what I can bring to the role — Scope’s Blog

After graduating from university, Lauren embarked on a long and difficult journey to find a job. In support of our new campaign, Work With Me, she spoke to us about the barriers she faced and gives some advice to disabled people who are still searching for a job. When I graduated with a good degree and […]

via Don’t focus on my impairment, ask me what I can bring to the role — Scope’s Blog

How to prepare for a physiotherapy (or hydrotherapy) appointment

Guest post

This article is specifically for those with chronic pain (of any type but especially from joint hypermobility syndrome/Ehlers-Danlos type III). While some people find that physiotherapy goes smoothly, others (especially with EDS) can find it very problematic. This post aims to help eliminate some of the problems that might occur by proposing novel ideas on preparing for your physio appointments.

Clarify the aims

Ask what the point of things are. Is this a test of your muscle strength? Are they checking if you’ve torn anything? How will the exercises they’ve suggested help you? Do they think your pain levels will decrease as a result of the exercises? After months and months of physio, with no results, I felt very in the dark about what it had all been about.

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Practice saying ‘no’ (politely)

Going to your first physiotherapy session can be much like P.E. at school. Someone is telling to do various movements, and this might not have happened since those days of smelly changing rooms and uncomfortable P.E. kits. It can be hard to realise this key fact: YOU ARE NOW AN ADULT AND THE PHYSIO IS NOT YOUR P.E. TEACHER. You might think this is obvious, but, trust me, it is so easy to feel you have to do whatever they say. I know I did, for several years, and deeply regret it! The truth is, you know your body and your pain levels much better than they do. If you know they are asking you to do something that will leave you in agony for the rest of the day, say ‘no’. If you know you’ve reached your limits, but they want you to do more, say ‘no’. Don’t just do it and then go home and repeatedly beat yourself up or mutter obscenities about the physio. Go and get some assertiveness self-help books if need be.

You can say things like:

‘I’d rather do that exercise later, when I’ve had chance to recover from this appointment.’

‘I’m not keen on doing that, as it will cause me a lot of pain. Is there an alternative?’

‘I’d like to stop now as I think I’ve reached my limit. Perhaps you can show me the other exercises at my next appointment.’

‘Please can we move more gradually? I’m experiencing very high pain levels already.’

And if you find yourself mutely obeying and regretting it later: don’t beat yourself up. I did it for years. I still am: it’s just so easily done.

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Learn about pacing, and be prepared to mention it

Pacing, in this context, is about moving gradually, and avoiding ‘boom and bust’, which is when you do too much, have to rest, then feel better and do too much again, in an endless cycle. Physiotherapy can perpetuate this cycle, if you’re regularly asked to do too much. The physiotherapist should only be asking you to increase activity/exercises very gradually. If that’s not the case, you may wish to ask if they can go more slowly, as you feel your pain levels are getting out of control.

Don’t prioritise physio exercises over your actual life

By this, I mean if doing the physio exercises is leaving you in too much pain to cook, clean, see your friends, or work, there is a problem. You are doing too much, and it’s going to make you depressed and/or frustrated with life. Tell the physio what is going on. Tell them that you aren’t willing to sacrifice your life to do their exercises. Discuss with the physio whether some everyday activities can stand in for certain exercises.

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Don’t allow your pain levels to become severe

If your pain levels feel too high, tell the physio. Give them a pain score out of ten relating to the exercises they are asking you to do. They’re probably not going to ask you about your pain levels, and they can’t read your mind. I once had a physio who kept pushing me to do more and more. I felt she was dissatisfied with my progress, and told her my pain levels were at 9/10 all the time so I really was trying. She seemed quite surprised, and sympathetic, and enquired about my pain medication. You might need to see your GP about exploring new methods of pain relief, if you haven’t already. Physio is meant to improve your life: it’s not an endurance test.

Evaluate the process and use your judgment

If you feel something isn’t working, say so. Consider cutting it out. For me, hamstring stretches often caused pain which would last for the whole day. I wasn’t feeling any benefit from them. I cut it out, and never looked back.

You might even find that physiotherapy as a whole isn’t helping. If you get to the point where it seems pointless, perhaps having seen a few different physios over a few months, be prepared to stop going. Physiotherapy doesn’t help everyone.

Do, however, maintain as much activity as you can, which is very important if you have JHS/EDS III. Even a month of less activity can lead to increased pain and disability in the long run: something I experienced the hard way. Set yourself goals for each day so that you maintain (or, if possible, improve) your strength and fitness. On your last physio session, ask for exercises to tone pain-free parts of your body, if appropriate.

Or if you feel you’ve got the picture and can continue gradually increasing the physio exercises by yourself, discuss it with the physio. They might agree you can just continue on your own, saving you from attending further sessions, which can often be quite a big hassle for someone with JHS.

Other useful questions related to JHS/EDS:

Do you think my proprioception/balance and spatial awareness may need some work?

Do you think I might need some guidance on how to avoid over-extending my joints?

Could you give me some exercises to ensure I’m strengthening all the joints in my body, not just the painful ones?

Could this exercise/stretch aggravate my tendency to over-extend this joint?

Are you a physio? Or have you done physio? Have something to say about this article? Leave a comment below.

Related links:

A form you might want to use after your first appointment to prepare feedback for your second (I highly recommend doing this!):

http://stickmancommunications.co.uk/epages/747384.sf/en_GB/?ObjectPath=/Shops/747384/Products/LFCM04

An article aimed at physios: http://www.csp.org.uk/frontline/article/stretching-point-hypermobility-joints-physiotherapy-research#comment-form

EDS-specific advice on preparing for a doctor’s appointment: http://www.edhs.info/#!about1/c21rn

Another article aimed at physios on communicating about chronic pain to patients: https://healthskills.wordpress.com/2016/09/26/i-know-my-pain-doesnt-mean-im-damaging-myself-but-i-still-have-pain/

An article on miscommunication between patients and physios:

http://stickmancommunications.blogspot.co.uk/2017/01/hypermobility-reluctance-to-exercise.html

 

Why we’ve got to stop pretending disability doesn’t exist

Britain is a nation that prefers to ignore what it doesn’t like. And it doesn’t like disability.

Britain is a nation that prefers to ignore what it doesn’t like. And it doesn’t like disability. We live in a society where people believe a number of erroneous things, on one level or another.

We believe we’ll never be disabled

First of all, we all think we won’t become disabled. I know I did. For a start, young people are known to believe they are invincible. And we think we’ll never be the 0.1% or the 1% or even the 10%: it’ll be someone else. We don’t, in general, make any kind of preparation, such as taking out income protection insurance, which provides you with a monthly income if you become too ill to work and your sick pay runs out. I’d never heard of this until recently, and once you have a condition of some severity, forget it, they’re not insuring you.

We also don’t really care about how rubbish government disability provision is. When I say ‘we’, I mean most people who haven’t had much contact with disability. If we did care, there’d be more fuss about how little the government provides, how difficult it is to access any provision, and how humiliating the process can be. There’d be more fuss about how the many of disabled people live in poverty [1], and how difficult it is to access the workplace, and how rubbish public transport can be. And so on.

There’s also a pervasive view that medicine can fix almost anything. People frequently seem surprised that doctors weren’t able to resolve my health problems.

We believe disabled people deserve lesser treatment

A wild claim? Is it really though? I think secretly a lot of people think that disability is often someone’s fault. Some of a hippy inclination think it’s all a matter of mindset. Others think a good diet (whatever their definition of that is) will solve everything. Others may even blame parents for bringing a disabled child into the world. And even those who think none of these things may think disabled people shouldn’t have access to affordable transport options and carers, at the taxpayers expense.

Having become a disabled person in my 20s, it sometimes amazes me how little people are sometimes prepared to do to adapt. For example, my local Abel and Cole delivery man was visibly not at all keen on taking the boxes of food to the kitchen, even though it only took up a minute of this time: maybe less. One day he just didn’t knock and left it all outside, despite knowing I’m disabled. I’m not alone in this: in one poll, 28% of respondents, all of whom were disabled, had experienced people refusing to make adjustments [2].

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Is it too much to ask for my ‘vegman’ to bring the box in my kitchen? Image by Marcus Spiska. Sourced from Unsplash.

The world often feels pretty unfriendly to disabled people. So many things could easily be adapted to our needs, but aren’t.

We see disability as black and white

People generally accept that someone who can’t walk at all is disabled. But shades of grey confuse them. Almost half of disabled people taking part in a poll said they had talked to someone who didn’t believe they were disabled [3]. A friend once told me that if people saw me getting out of my wheelchair and walking (which I frequently do) they’d think I was ‘an actress’. No doubt some think I’m some kind of benefit fraudster, so beloved is this conception (largely a myth: there are hardly any) [4]. Fact is, I can only walk 15-25 minutes a day without getting so much pain later that I can’t sleep. You can’t get far with 15 minutes, or indeed 25, so sometimes I use a wheelchair or mobility scooter. But the fact that when I walk, I do so completely normally really fries people’s minds. As someone once said to me, ‘It’s hard to believe you need a wheelchair when you get out and walk normally’.

Invisible illness is, in general, difficult for people to take in. This is compounded by our obsession with ‘fakers’. From teachers at school to bosses at work, anyone and everyone is liable to being labelled a faker when they take a sick day. Yes, people do fake sick days. But when you haven’t been faking, and you get treated like you have, it really sucks. You are expected to look and sound awful to ‘prove’ your illness.

I often hear the same sort of problem arising with people whose disability involves exhaustion. People see them weeding their garden and think they’ve recovered.

These perceptions raise dilemmas for the disabled person. I often wonder if I should try to look like I’m having more difficulty walking. I know someone who can only speak a short time before pain sets in. She sometimes doesn’t speak at all, using technology instead, rather than speak a little and then use the app, because people are less confused that way. One disabled person jokes about shouting ‘it’s a miracle!’ when she gets out of her wheelchair to get into her car, again highlighting how strange people tend to find intermittent wheelchair use [4].

Those with M.E. often seem to have the most problems with black-and-white thinking, as some can have patches where they’re fine, then be really ill for a while, and people sometimes think things like ‘well, if you just rest up before our dinner date, you won’t need to cancel’, which might not be the case.

wheelchair-and-feet-pixabay
The general public is not yet used to seeing a wheelchair user get up and walk. Image sourced from Pixabay.

We think it’s ok to phase out the disabled people in our lives

Since becoming part of online support groups for the chronically ill, I’ve discovered that chronic ill health is very often accompanied by isolation. We often see on social media ‘inspirational quotes’ like ‘cut out the negative people in your life; find those who energise and inspire you’. I fully understand cutting out an abusive, unsupportive friend, but these days many people will happily leave by the wayside anyone who’s inconvenient to meet up with or anyone who’s feeling depressed. Even an otherwise wonderful guy I dated at uni didn’t want to hang out with the disabled guy on his course. I’ve heard many a story from the chronically ill of friends just ‘disappearing’, stories that have brought tears to my eyes.

Why do people do it? Surely it must link in with what I said earlier about how we believe it will never be us in that position, and how we believe, perhaps only on a subconscious level, that it is somehow their fault. I am not completely immune to this myself, but I catch myself and think ‘come on, this is ridiculous!’

Many of the chronically ill suspect some friends disappeared because they are uncomfortable with the idea it could happen to them. I think this must happen, just as it does with elderly people. We want to be around happy, shiny people in a bright, perfect world, just like in the adverts. Many people will admit they fear death and so ‘just don’t think about it’, and I suspect much the same attitude is taken to disability. It’s a bit like avoiding hospitals. This is backed up by research which has found that 26% of non-disabled people tend to think of disabled people with awkwardness and discomfort. [5]

The reality is uncomfortable, but we urgently need to face up to it so we can be there for our disabled relatives, friends, employees, colleagues and neighbours.

Learning to live with a physical or mental impediment is hard enough as it is.

 

unsplash-jules-fuchy-man-alone-dark-sky
Many disabled people find their friends ‘disappear’. Photo by Jules Furchy on Unsplash.

Related links:

UK government-commissioned surveys into attitudes to disabled people

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/325989/ppdp.pdf

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Articles on politicians ignoring disabled people:

http://www.huffingtonpost.com/sarah-blahovec/politicans-ignore-disability-and-its-a-big-problem_b_7784824.html

http://www.disabilityrightsuk.org/news/2013/october/govt-ignores-disabled-people-over-pip

http://theconversation.com/ignoring-disabled-people-and-carers-could-cost-parties-thousands-of-votes-40052

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Ignoring disability in international development plans:

https://www.theguardian.com/global-development/poverty-matters/2011/oct/13/development-ignores-disabled-people-poverty

https://oxfamblogs.org/fp2p/developments-cinderella-why-do-development-organisations-ignore-disabled-people/

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Ignoring abuse of disabled people:

https://www.theguardian.com/commentisfree/2015/nov/26/the-abuse-of-people-with-disability-is-a-national-shame-that-were-ignoring

http://www.bbc.co.uk/news/uk-wales-21674047

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Ignoring disability links with incarceration and the needs of disabled prisoners:

https://themighty.com/2016/09/we-cant-ignore-the-link-between-disability-and-mass-incarceration/

http://www.miamiherald.com/news/state/florida/article56734053.html

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Uk politicians: some raising disability issues, others ignoring them:

http://www.independent.co.uk/news/uk/politics/george-osborne-pip-cuts-disabled-disability-laughs-house-of-commons-john-mcdonnell-parliament-a6946176.html

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On businesses ignoring disability:

http://www.huffingtonpost.co.uk/sophie-morgan/disabled-accessibility_b_6840528.html

https://crippledscholar.wordpress.com/2016/07/13/but-it-wasnt-designed-for-you-how-ignoring-accessibility-becomes-the-excuse-for-perpetuating-inaccessibility/

http://www.bighospitality.co.uk/Business/UK-businesses-lose-1.8bn-a-month-by-ignoring-the-needs-of-disabled-customers

References

[1] 30% of working age disabled people live in poverty according to Scope http://www.scope.org.uk/media/disability-facts-figures

[2] & [3] Polls commissioned by Scope and carried out by Opinium http://www.scope.org.uk/Scope/media/Images/Publication%20Directory/Current-attitudes-towards-disabled-people.pdf?ext=.pdf

[4] http://www.mumsnet.com/Talk/guest_posts/2292261-Guest-post-Invisible-illness-Im-fed-up-of-having-to-perform-my-disability

[5] http://www.scope.org.uk/media/disability-facts-figures