“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.