Nobody knows …

Nobody knows …

Come, sit a while …

“I understand” … “It will be fine” … “That won’t be a problem” … etc, etc, etc …. all good intended and positive comments that we are assured by those who interact with us. Then we get, “your leaving so soon” … “But he’s enjoying himself” … “you can’t just go” … and so on!

The reality is, ‘nobody knows’ what it’s like living with someone with a disability unless you actually do. The additional care and attention required is enormous and though living as normal a life as possible is always the aim, it simply can’t be that simple.

We are reminded of this as we are attending a family event, it’s great that we are all included, but from the start we face, no parking facilities, so a lengthy wheelchair walk to get to the venue. Then, there was no provision for wheelchair and grab-bag storage. Disabled toilets are provided, but only just large enough to get a wheelchair and user in – no assistant space unless the door is left open.

The event is split across two floors, one has steps to it, no ramp! Then there is the flashing lights, the loud music, even a choice less menu, all leads to the event, becoming a nightmare.

Leaving early raises comments of ‘disrespectful’ … ‘you have to stop until the end’ etc

The upsetting part of all this, is that it is family. Family who we would just love would say ‘don’t worry, this is how we will provide for it’ and that they understand we need to leave early, but appreciate our making the effort to attend for part of it. But that doesn’t come ….

The world, even amongst family, is becoming less and less inclusive and sadly less tolerant to those who need a little extra support and understanding. It makes me sad, but also makes my blood boil when you see friends and family step away, losing contact and increasingly distance themselves from us because we can’t fit into their world the way they want us to.

We learn to depend upon ourselves and create a world appropriate for us and our needs, but at times this smaller world knocks your confidence and you can understand how easily those with additional needs become isolated, and become an increasing ‘burden’ to society as simple provisions are not made.


8 thoughts on “Nobody knows …

  1. Very well put, Paul!
    Although we have not had the extent of difficulty that you have I can relate to this, and yes, sadly, sometimes family seem to have the least understanding and the highest expectation/demand! All that you can do is what you know to be best for Marc. We had some instances where I just said no, not going – and boy did that bring a reaction!
    Hope you are having a happy Friday and perhaps are able to spend some time in the garden!

    1. Thank you so much for your understanding David. It’s is welcoming to know we are not alone and yes, we find we are increasingly saying ‘no’ too. The garden is a good place to be for many reasons and this weekend looks like it’s going to be good weather as well, so plenty of opportunity.

  2. Oh yes Paul, as David has said, very well put.
    By no means have we the problems that you face, but, we like to live a quiet and simple life, that’s not appreciated by a certain member of the family. They now have to be given that NO, and deal with it. So, we understand your confidence being knocked. Why oh why can’t family understand other members needs. Sometimes you just wouldn’t choose them for a friend.
    Chin up, let off steam through your blogs, and do what you do best, giving your Marc all the love and care he deserves.
    Regards to you all

    1. Thank you so much for your support Les. We are, by no means alone with this and as you say, some family just wouldn’t be friends. We try as much as we can, because it’s right to, but sometimes, we do need to just decline and by happy with our own lives.

  3. As if life isn’t tough enough for you all!
    Maybe you should invite them all on your next long distance, limited facilities wheelwalk and see how they approach the ‘can’t make it’ or ‘dropping out early’ questions.
    Society in general has lots of time and money spent on awareness, but as we all know, awareness alone, doesn’t quite cut it in the real world.
    Good luck on your path of enlightenment to the masses.

    Please tell Marc I said hello.
    Best wishes

    1. That’s very kind of you Dougie, Marc says ‘hello’ and we will get through it. Those who say ‘I know about that’ all suddenly show what it is they do know and what they understand, sometimes, it a world apart. Thank you as always for your support 🙂

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