Some background for context.
We have 5 kids, all adults now. Eldest is profoundly disabled and lives in a care home near by. Up until 2011 when we left the UK, she would come home for visits, alternate weekends and we'd visit and take her out with us, the alternate weeks. Back then with 4 other kids and full time carers we mostly took her with us to do a food shop, have a drink out and home visits.
For the past 10 years whilst we've been abroad, taking her out has only been possible when either both of us are together, 2-3 times a year or when I've been able to get one of the adult children or a friend to come with me. We can't manage her and her needs on a 1:1 basis anymore.
So visits have been in her home, taking her for a walk around the block, time in the garden or with both of us and/or help, we've been out for lunch or a drink and cake.
Since we've been back in the UK our visits have been fortnightly, just a couple of hours at a time, but we've been exploring further a field, spending more time out in the community.
Normally after a visit, it would be a couple of months before we saw her again, so we focused on different aspects of our visits. Now we're back in the UK, time is less precious and we are enjoying spending more time with her, however we've noticed just how uncomfortable other people can feel around her and us.
We had issues with the neighbours , which is now being dealt with by Social Services, but we can't deal with people's prejudices, it makes us upset and it spoils the visit.
This week we went out to the shops and for tea and cake. Our daughter doesn't do waiting, queuing, sitting still, she likes to be on the go and is happy to wander. However this wandering can lead her to other people, she'll steady herself on the back of a chair, with a shopping trolley, on someones arm. We don't let her grab at people, she is under full supervision, but sometimes she can get up and move quicker than we can respond.
In general people are caring and understanding, their reaction when grabbed can be quite alarming but when they look round they can see it's not intentional and will accept our apology, tell us not to worry. Other times people will baulk as she walks towards them. She has no speech, no social awareness and no way of expressing any distress (you can see an example here)
So while I stood in the queue in the coffee shop, my husband sat at a table, she climbed and crawled over him, she walked between the chair and me in the queue several times, then on her way back she went to steady herself on a chair, an empty chair where a woman and her daughter had just sat down. The woman recoiled, tutted, shook her head and promptly moved seats. Whilst the woman in the queue behind me raised her eyebrows, her friend seated at another table smiled at my husband and our daughter, in almost a sort of apology on behalf of the other woman.
We shouldn't have to deal with any of us, but unfortunately we do. We're usually too busy sorting her out to have to deal with these attitudes and always think of a comeback later on when we've calmed down.
Staring and looking is something we can cope with, as my husband says anything that looks outside someones norm always raises a second glance.
We're determined that the next time someone responds like this we're going to ask them just what part of the situation makes them feel uncomfortable?
Do you any experiences of this? How would you react in this situation, both sides?
I am so sorry to hear that people's response add to your already heavy load. Most of us are far too sheltered from hardship --or even inconvenience!ReplyDelete
Thank you, we just need to ignore peopleDelete
This sucks when people make your life hard x #pocoloReplyDelete
It is a sad shame that some people respond this way. People are going to stare as they are curious but tutting and being rude is not on. I think people panic when they come into contact with someone a little different. xReplyDelete
most can be very kind, but the odd one or two do cause upsetDelete
I think it's a good idea to ask people what makes them uncomfortable. It might result in them being less judgemental and more thoughtful in the future - hopefully... #pocoloReplyDelete
the last couple of trips have been uneventful, thankfullyDelete