I’ve Got My First Wheelchair – Now What?

I’ve come across a post on Facebook where someone is asking for advice for a client who has found themselves “wheelchair bound”.  My first piece of advice was for them to stop using the term “wheelchair bound”.  The rest of my advice is below…

Dear person now in a wheelchair for the first time…

First of all, I’m sorry!

I’m sorry that you have found yourself to be in the position where you now require a wheelchair.  Life is undoubtedly about to get much harder than you are/were used to.  What can I say?  Sometimes life sucks.  In a fair and just world, we would all be able to walk and dance, but this world has never been fair nor just.  Do me (and yourself) a favour though – remember that “harder” doesn’t mean “over”.  Your life is different.  It isn’t ending *.

Make your peace…

Now that you know you will require a wheelchair to get around, I suggest doing what you have to do to make your peace with it.  It is what it is.  For the purposes of this blog, I am assuming you have already fought the good fight and there is no hope left that you will retain your full walking mobility.  Now it’s time to have a funeral and/or a party, depending on your personal preferences.

A FUNERAL – A good way to say goodbye to your mobility is to have a funeral.  Set a date, invite your friends and family over and mourn your loss.  We grieve when our loved ones die, but when a part of US dies, we are expected to just get over it and move on like nothing has happened.  This is only for the benefit of others who do not wish to deal with our pain.  Those people can just stay home if they want to.  If you want to, have a funeral.  Write down all your dreams that are now shattered and burn them.  For example, I always wanted to get my motorcycle license and now that is never going to happen the way I wanted it to.  Talk about the things you are going to miss, how your life is going change, whether you are scared or not.  Allow your friends and family to do the same!  They may also find it therapeutic (especially parents, who usually have dreams for their children).  And have some cake and other comfort food.

You have lost something.  Allow yourself the time and space to grieve if you need to.  Or even if you just want to.

A PARTY – A good way to say hello to your new future is to have a party!  You have either had your funeral and made your peace with your loss, or you feel you don’t need to – now perhaps it’s time to party and say hello to your new life!  Have wheelchair (or other mobility) games.  Write down your new dreams for the future and put them up on the walls for everyone to see.  Have a dream but not sure how to make it happen now that things have changed?  Talk about it and have a brainstorming session.  Set goals for your new life.  What do you want to accomplish in the next week/month/year?  This event is all about the positive.

(Note: While this event IS all about the positive, platitudes and disability porn may be more than you can bear…  Think about your limits and make sure everyone knows them beforehand).

Something else you may need to do as you move forward with things is this…

Own your story…

Every person requiring the use of a wheelchair has a different story.  Unfortunately us wheelchair users are also human and we screw up as humans do.  I personally screw up all the time, despite my best efforts not to.  I try not to assume things, but it happens.  I try not to think certain ways, but it happens.  Some people in wheelchairs are nice, and some are horrible.  Halo’s are not given out with our wheels.

One of the ways in which we can screw up is to assume that our circumstances apply to everyone.  I have friends in power wheelchairs who have no idea what it is like for me in a manual wheelchair, and so when I say “I can’t go to that place” they have no understanding of why.  They assume that because they can go, that I can go.  Some people in wheelchairs assume that because they are never sick or in pain, that sickness and pain are not major issues for other people in wheelchairs.  Sometimes I can’t go somewhere or do something because of illness or pain rather than mobility issues.

One of my next recommendations is to find a community that will help you, but before you delve into what may well be a plethora of differing personalities with different ideas about what it means to be “disabled”, I suggest you first work on being comfortable with your story.  Do not feel as though just because John can do abc in his wheelchair, that this means you either can, or should, do abc as well.  John has completely different circumstances to you, even if he shares a diagnosis.  Take the advice that applies to you, but don’t ever feel guilty for not being able to do something others can do.

Likewise, don’t feel bad about doing something that others can not.  If your circumstances are better, or different, and you can do abc when others can’t, this doesn’t mean you are faking the rest, or that you have no right to your opinion, or that you are not a true member of the community.

The other day, I was having a bad day and complained that my children hadn’t left our house in weeks.  A “friend” in a wheelchair (powered lol), made comments comparing her child to mine.  I’m not sure if she just forgot that my children have disabilities, but her comparison and comments were way off, not helpful, and actually downright bitchy.  I felt bad for a few minutes until I remembered that she knows next to nothing about me.  She had no right to say what she did.

Anyone who tries to speak for someone else is a tosser and should be ignored as such.

Not everyone is in a wheelchair full-time…

According to one study (2004), 63% of wheelchair users are part-time users, like me.  They require a wheelchair either sporadically when their condition worsens, or they require one when they leave their house, but are able to fumble about their home on legs for the most part.  If you stand up from your wheelchair in a crowded shopping centre however, you will soon see that society as a whole believes that all wheelchair users are in their wheelchairs full-time.  There are even meme’s mocking people that stand up from their chairs while in public.  We are verbally abused if we use our legs to get from the car to our chair in disability parking spaces.

For a long time, I also had this belief – that most wheelchair users were full-time and I was somehow the exception to the rule.  I felt guilty for not using my chair because I thought that maybe if I didn’t need it all the time, then I didn’t need it at all.  Then I felt guilty for using my chair – for pretty much the same reason.

By far, the most flak I have copped, the most judgments put on me, are from people who use a powered wheelchair full time (or close enough to it).  People in powered wheelchairs account for 6% of all wheelchair users (and full-time ones less than that).  I have a lot of trouble with my manual chair because my shoulder joints are as bad as my hip joints, and my hip joints are why I need the chair in the first place.  I need an attendant most of the time, to push me, for unless the ground is flat, I can not push myself, and sometimes I can’t push myself even then.  Someone in a powered chair who can propel and steer themselves around has no idea what it is like to be me.  Yet quite a lot of them seem to have no problem telling me what I can and can not do, and what I should and should not do, and how I should and should not feel.

Again – if someone is trying to speak for you, they are a tosser and should be ignored as such.  Our stories are all different.

So now you are (hopefully) prepared for the negativity that may arise, even from other wheelchair users.  So my next piece of advice is to…

Find a support group…

Support groups are great.  They can be there for your ups and downs, give you tips and hints and just generally be another community of which you are a part.  Whether you choose to be part of a support group according to your diagnosis, or according to your mobility status, according to something else entirely, or all of the above, support groups are almost essential in one way or another, especially when you are first starting out.  After all, while this post may offer some insight, it is only the opinion of one person.  I always think that we should learn as much as we can, for the more knowledge we have, the better our decisions will be.

Support groups come in a variety of forms – online or in real life, and sometimes, both.  They can be via Facebook, or Twitter, or email newsgroups.  They can be via your local council, or neighbourhood centre.  Join one (or ten) that suits your needs.  Even if they are only in the background of your life, you never know when you may need their collective advice or help (or when you may be able to advise or help another).

Get tips and hints on how to use your wheelchair…

I’m not going to go into this here, as every situation is different, and what may apply to me, may not apply to you.  However, it is worth getting online and googling what other people have found helpful (how to mount curbs – usually backwards; if you have a manual chair, invest in some biking gloves or you may get blisters; etc).

Here is a video that while pretty useless for me in my situation, might be good for others using a manual wheelchair 🙂

People will make assumptions…

Sadly, they will, and at some stage, it will really start to piss you off.  People may talk to you like you are either deaf, or stupid.  I have no idea why.  Or they may not talk to you at all, instead choosing to talk to whomever you are with.  My husband has quite often said “talk to the boss” when someone talks to him about something instead of me, even when I’m the one holding the purse or papers we are dealing with.  I have a face I use when out.  It’s my “don’t fuck with me” face.  It shows quite clearly that I am alert and capable, bar being able to walk.  I am otherwise polite and gracious, but that face saves quite a lot of embarrassment for all involved as it lets people know they are to deal with me as they would deal with anyone else.

And speaking of ignorance…

People will also expect you to wheel around them, rather than take a step to the side so that they can get past you.  Hold your ground.  Be careful though – some people will even be that unaware of their surroundings that they will end up in your lap!

You might also find yourself being pushed by someone trying to help (without asking you first).  Or you may come across someone using your chair to lean on.  Stella Young (an Australian disability advocate) once had someone hang their groceries on her chair while she was on a train!  I have had a few people come up to me, put their hand on my shoulder, and start praying for me.  Remember that your chair is not furniture – it is an extension of your body.  Make sure people respect it as such.

People might assume you can’t have kids (even though you can, or even do), or they might assume you can’t or shouldn’t drink alcohol or go partying.  They may believe you belong in a home, or that you can’t do anything for yourself.  There tends to be this assumption that people with disabilities are children and should be treated as such.  Some people with disabilities get angry and fight back with attitude.  Others smile and nod and ignore it all as best they can.  There is no right or wrong way to deal with it.  Do what works for you.  Make sure it is working for you though – don’t let your anger become bitterness, or your smile become an invitation for others to take advantage of you.

Assumptions are bad for you too – Don’t assume somewhere is accessible…

Some countries are far more progressive when it comes to accessibility, however speaking as an Australian who has lived in a rural town, I have to say that I have found very few places to be accessible.  We do have laws here, however they are completely redundant.  A business etc need only state that it was too hard or expensive to make a building or area accessible, and the law no longer applies.  And few people with disabilities have enough money to challenge them in court.  Accessibility can border on ridiculous sometimes – I have heard of a disability day held in a park with no wheelchair access, and disability awards where recipients in wheelchairs had no access to the stage to collect theirs.

Ask before you leave for a destination.  Are there ramps, elevators and accessible toilets?  Are the toilets free, or are they being used for storage?  Is there accessible parking and walkways to the final destination?  Ask anyone you can, however try and ask someone in a similar position to yourself if possible.  I couldn’t attend my own brother’s wedding because his idea of accessible was way off.  Friends in power chairs don’t realise that certain inclines, while accessible to them, are not accessible to me.

Have a back up plan.  Even if you have done your research, have a plan for if someone was wrong, or if something has changed.

Have fun!!!…

Try to have fun.  Being in a wheelchair can bring with it lots of laughs, if you let it.  I like to decorate my mobility aids.  There are all sorts of ways you can do so if that sort of thing floats your boat.  There are lots of jokes to be had – my husband once walked behind me in a crowded supermarket and yelled out “get out of the way you lazy bitch”.  I had to tell some very shocked and indignant people he was joking.  And somewhat more surprising perhaps – that I was married to him lol…  I make jokes about needing a learners permit when I bump into something accidentally (though for anyone else reading this – this joke isn’t funny when it is said by someone who is not in a wheelchair).

Finally…

Don’t be afraid to ask.  Soon enough you will have it all down pat, but when you are starting out, it can be confusing and scary and just plain hard to deal with.  It is alright to take things slow if you need to.  It is alright to ask for help.  It is alright to feel whatever it is you are feeling.  You haven’t lost your mobility.  You have simply lost the way your mobility used to work.  You certainly haven’t lost who you are.  Be true to yourself.

* I mean, unless you also have a life threatening condition…  but that requires a whole other blog post, and one I am only half qualified to write…

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Disability, Personal
4 comments on “I’ve Got My First Wheelchair – Now What?
  1. DeeScribes says:

    I agree with your points. But I have to counter something you said about power wheelchair users not understanding how difficult it may be for some manual users to access areas. I used a manual wheelchair for 15 years before my neuromuscular disease progressed to the point where I had to change to a power chair. I remember those days of struggle, where I would contemplate the energy required to do a load of laundry so I would have clean underwear vs. the energy required to go buy a new pack. Some of us are very aware and we make allowances when we invite our manual chair using friends to join us.

    • Yes I know :-). I have friends that have made similar transitions and remember what it was like, and I too will one day transition and I hope never to forget either. However, these are my experiences. Not with all power wheelchair users, not even most or even some of them. But a few. And I wish someone had warned me what it would feel like. I wish someone had told me my experiences were valid too. That is all I meant. I am sorry if my words hurt you in any way. I tried to word it in a way that would not – clearly I failed.

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Pissed off since 1995. Mad as a hatter since way before that.

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