Personal strategies for living a good life

One of the last sections of my Future Learn course is around personal strategies for living a good life with an impairment.

“Because disability studies collects a huge range of impairments, each of which are experienced differently in everyday life and have different impairment effects, there is no end to the personal strategies people with impairments use to support a good life.”

That being said, it does suggest some examples; community, the spoon theory as a means of helping people understand and mindfulness.

I started to respond with my own personal strategies but ran out of space so I thought I’d carry on over here and invite your ideas and strategies as well.

Community

Online community is a huge way I cope with things. I blog and use twitter to “meet” other people with my condition which helps me feel understood as well as having people to offer helpful tips such as what bottle opener works best. These friends also understand the impact of society and it can be so helpful to know you aren’t alone in dealing with things such as access issues or abuse. Indeed, it helps me to realise that I am not the problem, if it’s happening to other people then it’s not about me personally. I could rationally reach that conclusion but the individualistic nature of western society can really make things feel personal.

Pacing

Pacing is one of my really important strategies. If you have chronic pain or fatigue, do look it up. It’s the idea of doing something for slightly less time then breaking then going back to it rather than doing a lot of something all at once and then paying for it.

Humour

Humour is essential. Admittedly, my humour tends to be dry, sarcastic and biting but there you go.  The first day I had care we got into a bit of a mess getting changed. It, like a lot of my life, is undignified and humour can make it easier to cope. It can still get me down of course, it just means I’m not always down about it.

Without a degree of humour, it’s hard to let someone else wash you intimately.  It can become tense and awkward if you let it.

Action for change

This is something mentioned by one of my fellow students.  Instead of coming up with personal strategies to navigate a world which isn’t designed for us, we should challenge that society.  And I think this is really important and there are lots of ways of doing it, from raising awareness by sharing your experiences to hanging off a bridge in your wheelchair.

A moan

It’s not a very fashionable thing but having a bit of a moan from time to time can help.  Don’t get stuck there but getting frustrations off your chest can be cathartic.  And can help with awareness raising!

Support groups

This should probably be included with community but there’s something more specific about a group of people who are experiencing the same things as you.  With that shared knowledge, you can problem solve, you can suggest ideas which have helped you, you become more aware of shared issues and can come up with ways to address them.

Netflix days

Sometimes, we need a down day.  And if that’s watching netflix in bed, do it.  I remember a conversation with a friend who has mental health issues where she was describing how helpful it can be to give yourself a day to indulge in things.  So long as you have a day or time in mind to force yourself back out of it.  My fear of giving in and not getting out of bed has long been that I’d just never get out again.  So this ensures that won’t happen (sort of) whilst giving you the crash time you might need.

Acceptance

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference

– Reinhold Niebuhr

I’m not religious or in AA but the sentiment expressed in the serenity prayer is one that I think is important when it comes to coping with long term illness and disability.  There are lots of frustrating things I can’t change – I can’t make myself better for example – and getting stuck in a place where I’m angry about it isn’t helpful (there’s a grieving process around coming to terms with acquired disability which is fine, but it’s not a place that’s nice to get stuck in).  It’s taken a long time but I feel I’ve mostly accepted my illness and that’s so much better for my mental health and wellbeing.  And then there are things I can (attempt to) change such as my old workplace being inaccessible.  And this is a much healthier way to use my frustrations and anger.

Creativity

Whether it’s a page in my art journal or a bit of work on a canvas, creating things helps me in many ways.  It’s a distraction from my pain, it gives me a sense of achievement, it’s a way of expressing myself and probably helps in other ways that I’m not really aware of.

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What strategies do you have?

Disability and sexuality

edited to add links to blog posts

Woah.  So.  I had this idea for a blogpost about disability and sexuality, sparked by a blog I read and I’ve just covered a brief look at this in my future learn course.

Then I sat down and thought about it and was like where on earth do I start…

There are so many things to talk about:

And that was just a five minute throw stuff down on paper exercise…

This is clearly a HUGE issue and one which will not fit into one blog post… So.  I’m going to go away, do some reading and then come back with some more info and thoughts about some of these issues.

By the way, the Future Learn course I’m doing is great.  It’s called Disability and a Good Life; Thinking through Disability.

It’s been so much more interesting and in depth than I was expecting.  I’d kind of signed up to just see what it was like and throw in my experiences and opinions and partly to make sure that it wasn’t just lots of able bodied people talking about this unknown concept of a disabled person.  But I was so wrong.

We’ve covered so much; history of disability, disability around the world, who counts as disability, attitudes, intersectionality (which is where sexuality has come in) etc.  If they run it again, do it.  If not, they’re running a sister course in August called Disability and a Good Life: Working with Disability.

Taking up space*

The issue of taking up space is one that seems to come up time and time again in my life.  As a young child, I was quiet and well behaved and easy to miss.  As I got older, my depression convinced me that I was worthless, useless, a waste of space.  I withdrew, I would withhold opinions, I wouldn’t challenge things I knew were wrong.  I dumbed down my intelligence.  Older again, and this time it would be anorexia that would convince me I took up too much space.  I was literally too big.  I was metaphorically too big.  Fast forward again and this time the culprit is my disability.

Something happens when you start to use a wheelchair you take up more space literally and this isn’t always an easy thing to do.  In this society we are told that women should not take up space.  (If you’re a male wheelchair user, I’d love to have a chat about this with you, especially if you’ve not always used a wheelchair and can compare the difference.)

There’s no denying it. The chair takes up space. It doesn’t fit it a regular car, it doesn’t fit in some shops, in cafes people have to move for me. And all the time I’m apologising for it. I can’t reduce the size of my chair or the space I take up so instead I am constantly stuck in apology mode.

I’m so sorry that my existence is having some impact on you. I’m so sorry you’re having to adjust your path to get past me. I’m so sorry I’m trying to get a table in a restaurant and you’re having to move to accommodate me. I’m sorry I embarrassed you when you came out of the disabled toilet and got ‘caught’ by a disabled person**. I’m so sorry for existing as a disabled woman.

And yet I feel I can’t stop apologising. As a disabled woman my chance of having a crime committed against me is quite high. I’ve had people get annoyed (thankfully only in that British way of grumbling loudly to their friend so far) when I’ve not played the game and not apologised for the few seconds I inconvenienced them. I’ve had people grumble that I shouldn’t go into town on a weekend because it’s busy. I try to avoid this anyway as I hate crowds but that is my choice.

My wheelchair takes up space but I should still be able to go where I want when I want. Except again, this isn’t a reality. Because there are places where no amount of apologising will help me. I can apologise all I want but I’ll never get into the corner of the shop which is crammed full with displays in the aisles; “If you tell me what you want, I can get it”…”I’m sorry… I don’t know what I’m after…” and I leave.

 

With every half-finished sentence, every statement ended with a question mark, with every apology we offer to someone who has wronged us, minor or major, we deny ourselves, we deny our value.

With every tentative whispered proclamation, with every “I think…” when we know, we deny ourselves the space we are owed.

We are so socialised to believe we are not allowed space that we are complicit in our own erasure.

We make ourselves small so others are more comfortable. If I make myself small, people don’t have to face my disability and with it their own mortality, their own imperfect infallibility, the imperfection of me, the guilt I seem to impose on them. If I make myself small, they don’t have to face themselves, their lack of consideration when I turn up at the party and there’s a step into the house or the bathroom is upstairs.  “I didn’t think…” they mutter…as if I’m the one who should be embarrassed.

 

Every time I tell a shop that it’s ok when they don’t have a ramp, I’m letting them off.  I’m telling them that I’m not important and it’s ok that they aren’t accessible.  I’m giving them permission to reduce the amount of space I can take up.  Whether that’s in their shop or in their minds.

Every time you have to ask for the key to the disabled toilet or get a stranger to go into a shop to ask a member of staff to bring out a ramp or get told to go in the back entrance by the bins, you are told that you are not important.  You are not as valued or as worthy as other people.  You are told that you are a burden, a nuisance, an ‘other’. That you should not be there.

Letting yourself be who you are and owning that in a society which does all it can to prevent this is a powerful act.  Without it, the issues which make us feel unable to take up space will be perpetuated and will continue to reproduce.  We need to challenge the physical issues which keep us “in our place” but also the attitudinal issues.  Why should I apologise because you need to let go of your boyfriend’s hand in order to pass me on the pavement?  Why should I be embarrassed when I ask you to pull a chair in so I can get past?  All I have done “wrong” is to exist with a disability.  If you can’t deal with it, you should be the one apologising to me.

Taking up space is a truly political act.  When I was at my worst with anorexia, I had no capacity to question or object to the way society treats women, the patriarchy was having a great time. When I can’t access buildings or facilities because of my disability, I can’t easily or effectively object – I can’t physically get to the people I need to complain to.  I can’t make them see me.  They’ve engineered that well.  Preventing us from taking up the space we’re entitled to is a fantastic tool of an oppressor.  Let’s try and break that.

Take up your space and take it up proudly.  We are all human. We all deserve to take up space.

Check out Vanessa Kisuule’s “Take up space” for some excellent poetry about women and space.


 

*I’m going to use the word space a lot.  I mean literal space as in the physical footprint I have when I stand or sit or lie down.  I also mean audible space – the space that is inhabited by noise.  Like all ‘spaces’ there is a finite amount available. In this case, people who are shouting take up more of it.  Similarly, I might be referring to the space in societies’ consciousness.  Or the space for ideas and thoughts and opinions.  This idea of space as more than physical is talked about by Rosalind Jana.

**not all disabilities are visible but I’ve had a lot of cases of people who misuse disabled toilets, normally because they are getting changed or want a shit…

The cost of living (with a disability)

A few weeks ago, in the middle of the night, I was thinking about my Personal Independence Payment (PIP).  In case you don’t know PIPis a disability related non means tested UK benefit. There are two types of pip which are split into levels depending on the nature of your disability ; independent living (standard and enhanced), mobility (standard and enhanced).  I get enhanced living and standard mobility which equates to about £400 a month.

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I was thinking mostly about what PIP means I can afford to pay for:

  • Taxis to get me door to door when I can’t use my wheelchair for whatever reason (such as attending my psychologist appointment in a non accessible building)
  • Wheelchair taxis when I need to get further or somewhere in the rain (because rain means I have to have wheelchair waterproofs and I can’t get them on and off by myself)
  • Extra heating costs because I spend a lot more time at home and get a lot colder than most people
  • Replacing the clothes and shoes I can’t wear because of changes to my splints
  • Splints, not easy to get on the NHS
  • Wheelchair, related maintenance, insurance and accessories such as a rain cover.  Not a small cost.  I had to pay for the entirety of my wheelchair which was £7000.
  • Pre prepared and specialist food because my carers don’t get much time to cook for me
  • Kindle books which are more expensive than charity shops or libraries (btw, a lot of libraries do e books now)
  • Mobile phone bill, being housebound means if I want to keep up with friends and not feel lonely I need to send more texts or make more calls than I might otherwise
  • Internet, because internet is a lifeline when you struggle to get out (this could easily be a blog post of its own) both socially and from a shopping, paying bills, banking perspective
  • Additional costs incurred in trying to get a computer set up I can use eg voice recognition software, special keyboard and mouse
  • My tablet because I can’t write
  • Plumber costs to do a super super simple job that most people would do themselves, £100
  • Painting my new flat, again, if I was healthy I would have done this myself, £1000
  • Getting online food delivered by a more expensive supermarket because the cheaper one won’t bring the food into my kitchen, at least £40 a go because that’s the minimum spend
  • Rise recliner chair because I spend so much time at home in my living room and I need to be sitting in something which is supportive and comfortable
  • Manual wheelchair, because the electric one isn’t always suitable £300
  • Crutches, because the NHS don’t do the type I need £100
  • Carer travel expenses which is more than the cost of petrol
  • And on it goes

And I get £400 a month to cover ‘additional costs’ of being disabled.  That would take 17 months to cover the cost of my wheelchair, minus accessories, maintenance and insurance.  Let alone all the rest of the things I need.

Scope back me up here:

Life costs more if you’re disabled. This has to change.

Disabled people and their families face many extra costs. From expensive equipment to services, many pay over the odds for essentials.

Life costs you £550 more on average a month if you’re disabled, but the support to cover these costs – Disability Living Allowance – is only £360 a month.

Their research identified five key areas which contribute to the extra cost of living with a disability:

  • energy;
  • clothing and bedding;
  • specialised disability equipment;
  • taxis and private hire vehicles (PHVs);
  • insurance.

A few stats around the issues:

Over a third of disabled people spend additional money on clothing and bedding as a result of their impairment

There are at least 833,000 fuel poor households in England with a disabled person

1 in 3 disabled people spend money on specialised equipment

At least half a million disabled people have been turned down for insurance

And yet the government still think it’s appropriate to look to cut disability benefits…

The scope report goes on to suggest things that different groups of people need to do about this but I’d be grateful if you could share this post and make more people aware of the cost of living with a disability.  As I’ve mentioned on here before, I had always assumed that there was help for people when they needed wheelchairs, equipment etc and I’ve been horrified to discover just how little help there really is.

Carriage clocks* and more

Retiring at 29 wasn’t part of my life plan. Not that I really have a life plan. But, like most people, I assumed I would spend my adult life working and, given my pain and the ever increasing retirement age, I’d have to leave on ill health. But i was expecting that to be in my 50s or so.

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not an accurate picture of my retirement…

But increased levels of pain and fatigue have sped things up. I’ve done all i can to keep working :

  • I’ve had numerous access to work assessments and been provided with lots of helpful equipment and taxis to and from work
  • I reduced my hours to four days a week
  • I tried working at home
  • I reduced my hours to three days a week
  • I looked at spreading my hours across the week, more days but less hours
  • I’ve carefully organised my leave to ensure I got regular time off
  • I tried to get the employer to understand how their partly inaccessible building made my day so much more difficult

But even then I still couldn’t make it through my three day working week. At the end of a day in work I would get in, collapse into a chair and struggle to give my carers coherent instructions. And I would spend all my none working days recovering from work. And there were parts of my job, such as phone calls to the public, that I wasn’t comfortable doing when I had taken increased pain relief. As well as the physical issues, the mental exhaustion and fog made it hard to think and assess situations as fast as I know I can.

So, in early February I put in my application for retirement and went off sick. It’s taken a lot longer than it should but I finally have a leaving date – 20th may.  I will also receive some pension as well, details not yet known, which will help me financially.

I have had numerous people tell me “Ooh, I couldn’t do that.. I’d get bored..” and have come up against medical people who have been less than supportive and haven’t even attempted to understand my circumstances.

An illustation: I saw a pain doctor for the first time a few months back, I normally deal with a lovely woman who is all about maximising quality of life.  This guy may have read my notes, but quite probably hadn’t.  He asked what medication I was on and I went through it and went on to explain that I was hoping to reduce some of the morphine because I was stopping work.  He said “from a pain management point of view we would not recommend this”.  I started to justify my decision but he didn’t want to know.  He kept repeating his statement, even when I started to cry.

This isn’t an easy decision.  It’s not something I’m taking lightly.  I haven’t done it on a whim.  I have tried all the options available to me and cannot find a workable solution.  And this is with the most supportive manager and team that you can imagine.  If I can’t do it with them, I can’t do it anywhere.

The other standard reaction is jealousy.  Which I find difficult because I don’t want to be doing this.  The rest of my life is stretched out in front of me with nothing in it.  Literally, I have no plans this year except hospital appointments and a trip to Oxford (this has a lot to do with the door and carer situation but the point is there).

I’ve not worked in three months and, even before that, I knew I needed to be careful because this was a risky time for my mental health. Again, things haven’t been helped by the door opener not being in place making me housebound and not getting all my care hours.

Up until a few months ago I had worked or been studying or both all my life.  I worked for my dad (a farmer) from an early age, basically when I could start being helpful; I started working Saturdays as soon as I could (16); I worked full time in the summer holidays when I was in sixth form and uni; I had one painful month job hunting when I left uni and then moved straight from job to job till now.  So not working is a HUGE change.

So… what next?

I am hoping to find a course to start in September on writing, craft, humanities…  I’ve got lots of interests so should be able to find something to go to for a couple of hours a week.  And hopefully I’ll meet other people who aren’t working the traditional 9-5 jobs.  Because almost everyone I know is, and that means I can’t see them during the week.  I’ve also looked at online courses through futurelearn and coursera.

I already know i need to do something creative most days and I’ve realised I need to do something intellectual on a regular basis so i came up with a list of things I need to keep doing on a daily-ish basis to help me cope with retirement:

  1. Something creative – art journalling, working on some of my creative projects or wanderlust activities, writing etc
  2. Something intellectual – a course, a non fiction book, a crossword
  3. Something outside – when the door is fixed of course…
  4. Something which helps me check in with myself – tarot, art journal, friday morning check ins (which I keep meaning to blog about)
  5. Something restful – because I am still ill and still need to look after myself and give myself enough down time

What I would really like is for people to suggest more ideas for these areas and tell me how you cope with being off work, whether its long term sickness, retirement or not having a job.


  • engraved carriage clocks, pocket watches etc seem popular retirement gifts – you’re no longer working, you’re probably in your last years, have a time keeping device to count them down…?  I do not want a clock or watch for my retirement!

Bureaucracy is disabling me.

Ok, bear with me, this could be a bit whiny and it’s probably going to be longer than normal.

I take meds four times a day; morning, lunch, 4pm and 7pm including controlled drugs at morning and 7pm and liquid morphine as and when I need it.

About a month ago, my care agency told me they absolutely cannot keep doing my meds. By which I mean, transferring them from the weekly blister pack which I can’t get into to the little daily meds box which I can open. This also means I only have to carry one day at a time each time I leave the home. And we can also add in the controlled drugs which can’t go in the blister pack. All seems sensible to me. Except transferring meds, or leaving them for me to take later, is secondary dispensing and that’s not allowed.

So, being a problem solver, I started trying to figure out how we fix this. And I’ve thought and thought and there are no sensible options. I’ve been shown a telecare medication dispenser. Which to be fair, would give me (some of) the medication without carers having to get involved. It couldn’t dispense the controlled drugs or the as and when morphine.

It is also huge.

And I would have to take the whole thing with me if I wanted to leave the house over meds time (you know, to do something wild like go to work).

As I can’t get it out my bag I will still need help taking my meds.

When it’s time, it’ll beep away until I take the tablets. Which is great if I happen to be in a meeting – sorry, don’t mind the beeping, could someone grab the giant meds thing out my bag as I can’t do it myself – nothing like having a giant sign on your head saying disabled.

I’ll also have to carry about a week’s worth of meds if I go out which will be great for thieves – nice stash of tramadol there…

It will need filling weekly which means I need to be home at the same time each week so the pharmacy (there’s only one which will fill it) can drop a filled box off and take away the old box. But that’s ok because I’m probably going to be tied to my house by the meds box anyway…

Plus the controlled drugs can’t go in it.  That’s ok in the morning as my carers are with me but they aren’t currently at 7pm (they do 5.30-6.30 as that’s when I have my tea, any later and I’m too tired and can’t be bothered and anorexia says nah, not tonight).  And I’ve just heard from the social worker that they wouldn’t extend my evening call.  So I would have to have 6-7 instead meaning I will struggle with my tea and I’ll be going to bed straight after I’ve eaten (I’m in bed by 7.30 at the latest).

And there’s the as and when liquid…Even if we can replace it with a tablet, I still won’t be able to get it out of the packaging. And I take it any time of the day or night. 3am is not unheard of… In fact the middle of the night and when I’m at work are the most common times for me to take it…  One of the ‘solutions’ social services suggested was that I get my team to dispense my medication.  They do at the moment because we haven’t got a choice but it’s not appropriate and I can’t rely on them being there or me being with them at the right time (you know, meetings and such get in the way).

And social services keep saying it’s not their responsibility… it’s health’s…

I’m off to see my GP with my care manager on Tuesday… I have a sinking feeling they will tell me it’s not their responsibility, it’s health’s…

Wish me luck… the alternative is i have to be at home 8am,12pm,4pm and 7pm unfailingly and having my evening meal screwed up.

Being disabled is a full time job

So, as I’m sure you’ve heard, the government are putting pressure on disabled people to work. Perhaps if all the bureaucracy around being disabled were easier to manage it might be more realistic.  Let’s look at a week in my life balancing being disabled with working:

Monday: day off. Wake up at 8.30. Carers are with my 8.30-9.30.  Carer comes back to my physio appointment at 12 which means leaving at 11.30 or earlier in order to get a blue badge parking space at the hospital. Physio appointment includes prejudice and inappropriate treatment.  It wipes me out and we get home by 1.30.  I’m supposed to meet with CQC inspectors at some unknown time today about my care agency.  They never turn up. Carers are back 5-6 and then I’m asleep by 7.30. At some point I needed to ring the taxi company that take me to and from work because taxis keep failing to turn up. Add onto that my dislike around phones and that simple task becomes huge. I also needed to speak to my social worker about social housing.

Tuesday: work (I do work 3 days a week). Wake up at 7.15. Carers 7.15-8.15.  Taxi due at 8.15. Most of the time it’s getting on for 8.30 before it arrives. I have to wait outside because I use my wheelchair and I can’t get it into my house. This leaves me cold and in increased pain before I’ve even got to work. Finally get to work, which isn’t as accessible as it should be. Battle people’s prejudice in the work place. The struggles around actually being in work (despite numerous access to work assessments) is a blog post of its own. Go home. Or I would if the taxi turned up… Carers are waiting for me when I get home and leave at 6.30.  Bed by 7 on a work day.  Exhausted. In pain.  On work days I basically do nothing except attend work.  I have no energy or spoons or time for anything more.

Wednesday: day off. Carers 8.30-9.30.  11-12, seeing my cpn. She has to come to my house because the place she works is inaccessible. I find appointments quite tiring.  After lunch and resting a while I then chase up my wheelchair appeal. I also have to sort out seeing a house with my social worker which involves ringing the taxi company again. Carers are back 5-6, I’m asleep by 7.30.  Days i’m not in work I will try and get something creative done, depending on pain and energy levels.

Thursday: work. See above.

Friday: work. This is the hardest work day because I’m still exhausted from Thursday.  Before I start work I have to see my psychologist so i don’t get to work till 11am.  Thankfully my work are incredibly good to me because this is 2.5 hours a week when I should be in the office.

Saturday and Sunday: similar to my days off but Saturday is hair wash day and Sunday is body wash day.  Both are exhausting and painful and take a lot of time.  I can’t get into my bath/shower so we have to sponge wash me.  It’s cold and undignified.  If I want to go out, I have to do so when my carers are here because I struggle with my locks.  On a good day I can manage them once in the day so they either need to be there to lock up or unlock.  On a bad day I can’t manage the locks at all.  I also can’t get my wheelchair in my house so going out means I have to get a carer to put it outside or I have to struggle to get it out of my shed.

In addition to the above, I need to do regular physio, all the normal life admin, manage meds, sort out mistakes in care rotas, go to regular gp appointments, sort out benefits etc etc. All whilst exhausted, in severe levels of pain and battling mental illness.

Because my pain is getting worse, I’m struggling more and more to actually make it to work on those three days.  In addition, getting cold whilst waiting for unreliable taxis and having to chase taxis and argue with the taxi company (yes I did book a taxi…) makes me start to wonder if it’s really worth the amount of mental and physical effort work takes out of me.  Just getting to work in the morning can be a feat of its own.