Disability – Understanding Disability and the DiffAbled

Written by Julie Taylor

lonely-1What Does It Mean To Be DiffAbled?

How can you help if you’re not diffAbled?

Perhaps you could even give this article to your loved one to read?

If you’re not disabled, please read this article to help you understand. And if you should ever see someone obviously struggling with bags or dropping shopping, stop to help them. Whatever their age. A few moments of kindness can brighten someone’s whole week.

I’m always wary of boring people…  I should clarify that statement!  I am wary of being boring and no-one likes to hear ‘battle stories’ over and over.  On the other hand, unless the people I care about enough to tell my story to truly listen and understand me, the world can be a very lonely place.  And I think the reason that people in general ‘go on and on’ about their war stories is that no-one has appeared to be truly listening and hearing them? At least, by the way people act I would guess they hadn’t heard me…

Therefore, ‘we that go on and on’ think “Be patient…  Tell it over and over!  One day I hope you’ll hear?”  Meanwhile it’s driving you nuts!  Let’s stop this agony and connect…  If you have heard, let me know.  Andrepeat back what it is you have heard (so I don’t just feel ‘shut up). And if youve heard, then why oh why does it not show?  I know, I know…  How?  What can you do?  Read on…

Any disability, particularly an invisible disability is hard to ‘get’.  I don’t find it easy and I’m livingit!
At times I’m very frustrated by my disabilities.  People need people and to be understood, to be ‘normal’ and to be ‘one of the crowd’ – even when they’re different. (Different colour, sex, ability…)  That’s such an important thing.  I often get the impression that others think that I somehow like being different…  That I’m just being difficult or obtuse. They often don’t get the ‘important piece’ of the story, which is that I keep repeating myself because the evidence – what I see in their actions – does not give me the message that they understand me.  And I badly want to be understood.

product_thumbnailThere is a wonderful series of adult speech therapy books written by a top speech and language pathologist – read more about them here…  All the pieces of your language are still there, they just need patiently putting together.

I have just as much to offer as anyone else – I’m constantly finding new strategies that work so that I can succeed in your world. My dad had a beautiful saying – at least, it’s beautiful to me now (irritated the heck out of me as a teenager!):  “Where there’s a will, there’s a way.” Never give up.  The people who really ‘get’ me immediately are often (not exclusively) other disabled people – and I never have to repeat my war stories to them.  And it’s a relief – no-one is happier than me to feel I don’t have to tell those stories over again.  Some people truly listen and seem to fully understand.  And some people ‘can’t’ hearwhat you have to say.  For reasons of their own – mothers can’t bear to think of their children as disabled; listening takes time and thought and for some people they’re just not in the right place in their own developmment to be able to listen; some people are just into themselves and don’t really want to get involved…

I’ll just here into a brief summary of what’s behind my own war stories – otherwise they may not make sense.  I’ve had 2 separate injuries, one serious (25 years ago) and one not-so-technically-serious (3 years ago).  After about 8 years from the first injury I was comfortable (at last) and had managed to recover to an amazing degree…  I was told I wouldn’t be able to walk again but I had.  I was walking, running, dancing, milking a cow, driving a tractor…  I worked full time and had energy over for my family – not always easy as I had 4 sons! Above all, I felt well and I loved my life again.  My best friend says she had no idea at that time that anything was ‘wrong’ with me.

Then I had a second accident and for a while I was right back where I started.  And I still haven’t completely ‘adjusted’…  By that I mean I have to learn exactly where my new limits are and find strategies to overcome the struggles I still have.  I have to try and work out when to stop pushing myself, accept the way I am now and learn to strategize differently so that I can find that delicate balance between pushing myself too much and enjoying my life.  The ‘not knowing’ my limits drives me nuts and so it’s on my mind a lot.  I notice that I do talk about it more now than I did say 5 years ago – in fact at that point I hardly ever mentioned it.  I wish I could find someone of my own age who’d ‘been there’ – without having been influenced by stereotypes (ie telling you what you won’t be able to do) and who had found a truly ‘comfortable place’ for themselves again.  They could guide me there again.

Meanwhile…  I can guide other people.  Just not myself!  I do know that we have to keep trying and pushing ourselves – otherwise you run the risk of setting your bar too low and settling for less than you can do…  And I think every single one of us wants more out of life, not less.  I’m just not good at seeing my own limits.  And that’s common, I think.

This is what tends to happen to me…  See if it might help explain some of your own experience.  And please let me know your experiences so that I can share them (with or without your real name – click here) so that others might be able to use them as a guide.

My own problem is cognitive – brain and head injury often tends to be.  And energy and stamina are key players.  So the very problem is ‘me’ (because I am my brain, to an extent).  This part of the brain that’s broken for me is what would govern the feedback of how tired you were and would then let you know when to stop.  That part – my ‘action-stat’ – doesn’t work so well.  I don’t have a good grasp of exactly when I’m over-depleting myself of energy and stamina – until it’s too late (which it easily is).  If that makes sense?

One of my good friends was paralyzed from the waist down and her arms were weak.  She was told she wouldn’t walk again.  Slowly and with determination and the help of a good rehab program she has built up the strength in her limbs and for part of the day she can walk slowly.  After about 8 hours from when she first gets up, her arms and legs are like noodles (her words!) and she can’t stand or pick up a cup.  So she – and anyone – can see clearly right away that she’s reached her limit. She has to stop.  Hers is a visible disability. Physically she can’t help but rest.  And by the very next morning she is OK again.

She says that my brain is like her legs! I think that’s a lovely anaology! Brilliant, clear and simple!  My legs keep working.  So I keep going.  I can’t really ‘see’ that I’m tired and need to stop – and neither can anyone else.  So I keep going.  And slowly I get to the point where I can’t function.  My brain becomes a noodle! Mental flexibility and oordination is gone.  Sometimes for weeks.  Mine is an invisible disability.

Whatever your disability, I think it’s really important to keep trying.  Just like a child, really, keep testing the boundaries…  Can I do this?  What will hapen if I do that?  Practice, practice, practice.

While I’m ‘down’ and exhausted, some opportunistic little bug often slips by my immune system and lays me flat and I have to catch up with my stamina before I can get going again.  I guess I lose ‘condition’ (sounds like a horse!) little by little, for months and it often takes as long to catch up again.  Very, very frustrating.  I see my actual sickness as my body’s final, frustrated attempt at telling me to “stop already”.  And also as the ‘final straw’ for my immune system, which is just overwhelmed. Doing the physical stuff that we all – including me – take for granted takes a lot of effort.  Even the basic necessities take conscious thought, and that’s tiring.  When I’m ‘down’ everything is obviously so much effort. But as my doctor says, what I have to learn is to conserve my energy better when I’m feeling good so that I can stay healthy: Use the disabled parking space; go for a walk on the beach every day; make sure I have a couple of hour long exercise sessions each week; rest…  With Glutathione and a good broad spectrum vitamin supplement I can usually fight those bugs and stay well.  In fact glutathione is even slowly starting to extend my stamina and mental clarity – I’m amazed.

I have to be continually careful.  Yes, I do push myself.  I wouldn’t have it any other way.  I pick myself back up after I make a mistake and overdo it and start to rebuild again.  And I always manage to forgive myself – which is very important.  I exercise even when I can barely get out of bed and I go singing and walking and do brain exercises…  Daily I check my computer calendar and email and check my bills are up to date online.  I have emails and alarms set up to remind me of appointments and what I have to do.  I take all the steps that I’ve learned over the years that are so vital and I find strategies.  And of course I promise myself that I won’t overdo it again!  And try to hold the well-meaning advice-givers at bay – at this point criticism is not helpful at all.  I know well what I’ve done and what I need to do. I’m usually feeling quite sensitive at this point and need quiet hugs and understanding.  Only.

What makes it so hard is that sometimes even I look in the mirror and wonder what’s wrong with me.  Why don’t I have the energy to hold down a regular job.  I used to?  I look fine.  I can’t see a disability.  I move my arms and legs and do a salsa move in the mirror.  And shake my head.  At times like that I can easily doubt myself.

One of the things I do at times like that is to go for a walk – usually on the beach…  Breathe in deep and blow out hard…  I imagine I’m blowing out all of the doubt and ‘nasty thoughts’ and well-meant (I hope) advice…. I remember that I have just as much as anyone else to give to this wonderful world of ours.  We all have gifts, every single one of us.  Being disabled is tough.  Always.  Being invisibly disabled has its own challenges: you come up against disbelief, doubt and questioning. You even do it yourself…

At the end of last summer I went to my first Brain Injury Convention (after 25 years!?).  I can’t tell you how wonderful it was to be totally accepted by everyone.  Even the wait staff realized that we all had disabilities and didn’t question our various requests. Being so accepted – and valued – was simply fabulous.

What do I want to say with this article?

  1. I want to give the non-disabled a glimpse into a world that’s never easy and that’s so very different to theirs (I hope).
  2. I want to explain the differences – just a little – between visible and invisible minorities.
  3. I want to let other disabled people know that they are not alone and this constrant struggle is actually with us all.

And I want to tell the guy who followed me around the department store last week – actually yelling at me – that I can indeed use the disabled parking space when I need… Even though I’m not in a wheelchair.

I want to tell him that I’m very conscious of the needs of other disabled – probably way more than he is.  Andwhen I use that space, it’s because I am right at the end of my strength. I want to tell him that I didn’t look at him or answer him because if I had, I would have been in tears and unable to carry on.  My need and right to shop is equal to his…

And I want to hug him…  For caring.  Even though he has a funny way of showing it.  And because his anger is possibly because of his own feeling of total frustration and helplessness and inability to help someone he loves to cope with their disability…

How could he use his strength and ‘bluster’ in a way that would be really helpful?

Whenever he sees anyone doing what he was…  Harrassing and harranguing…  Tap that person on the shoulder and explain to them what could actually be the truth.  I couldn’t be assertive at the time and I needed the wonderful man who eventually did step up and ask him to leave me alone…  Thank you, whoever you are.

Read this article to help you understand. And if that man should ever see someone obviously struggling with bags or dropping shopping, stop to help them.  Whatever their age. A few moments of kindness can brighten someone’s whole week.