Sorry...just needing to rant! Do you all understand the frustration of people ignoring your loved one because they are disabled in some way?
I know people want to be well intentioned, but...🤨. Our church changed premises yesterday and the new building is accessed by 6 steps...not shallow...and a ramp with an impossible gradient. We gave it a dummy run last week, with no one around, to try to avoid the humiliations which I know many of you understand. The wheelchair on the ramp didn't manage more than a metre, so Ian decided he would throw himself over the balustrade on one side of the staircase and haul himself up sideways, step by step. He managed it and was thrilled with his achievement, which was great.
So we were all set for Sunday. Arrived before the meeting began and then a man, who should have known better, came up to us and said, in front of others, "o Juliet, we've got some strong men ready to help him." HIM??! He completely blanked Ian, who until that point had been feeling pleased with himself.
Aargh! So much for good intentions! I felt like popping him on the nose! Very Christian! I did have a word with him later and asked him to not treat my husband like a deaf moron. I will be making peace with him tomorrow, but sometimes the warrior in me comes to the fore and I fight for my man's integrity and dignity.
I just can't abide it when Ian is treated with disrespect because people feel awkward with his deteriorating mobility. But it is only his mobility! Ok, maybe he doesn't speak too much now, but he certainly has all his little grey cells!
I guess church is as good a place for me to calm down and put things back into perspective. Still a little sore, though!
There. That's better! Thanks for 'listening'.
Love to you all,
Juliet
Written by
JCRy
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No problem, Juliet! Think we have all experienced that sort of behaviour. They are probably quite embarrassed too. And don't yet understand how to behave. Invite him for coffee, start a conversation between the 3 of you and leave the room to refill the coffee pot!
I've been there more then once with people. Like already stated people don't know how to behave since they don't fully understand what's wrong. I just tried to thank them for whatever they were doing and explained Dad could hear and understand them.
We are all human beings, ie black white, disabled, Ill, old whatever it is.....I’m not religious but these ‘people’ are certainly not behaving in an educated way!
I have a ‘slight’ temper and would have told them/him/her to foxtrot!
What disappoints me is that the new premises had a ramp with an impossible gradient. Why? There are disability regulations regarding this and churches have to abide by these. As for your response I agree with Jen.
Sorry. I was basing my response on the fuss which was made at our church when we conformed to the disability regulations. But, aren't Spain in the EU do they not have the same laws?
It is a rented premises...an ex bar-restaurant! There is a ramp...almost the same gradient as the steps, though, but I guess the owner got away with it. Easy to do here with the adequate backhander! Disabled access wasn't an initial consideration, though its profile has been raised now! Hopefully something more appropriate will come from this. Many thanks to you both.x
We hope and pray that this unfortunate incident may draw the attention of the community to respect the needs of the disabled and their carers. You make a valid point. In Southern Europe EU laws are loosely applied whereas in the U.K. They are rigidly applied.
It is annoying, frustrating having those “does he take sugar moments” but many people, including my late darling, don’t know how to relate to folk with disabilities of any kind. If we have never had the experience of knowing people with any special need, we have to learn what they are capable of. Soon after my husband was diagnosed I asked our pastor to explain the condition to the congregation when we weren’t there. I wrote down what symptoms he would have and emphasised that he understood everything that was being said and would until the end. He did, as I heard from many and although some appeared to avoid us, through embarrassment I think, others included C in all of our after church conversations, not expecting a response but being thrilled when they got one. I did the same with his bridge group and asked the organiser to let me know when she thought he could no longer play. When we arrived on a Sunday morning there were always men and women willing to help us. I told Colin I had to accept help however much we hated it, and also reminded him how he was always the first person to help and how it made him feel when help was appreciated.
As suggested, speak to someone about the ramp but if nothing can be done, accept all the help you need.
Thanks, NannaB. I am sure it is rooted in embarrassment and the daunting paradox some people fear about a man of faith being so obviously incapacitated.
And yet another dear man asked Ian directly if he needed help just a moment later.Hey ho. Such is our daily challenge! We keep on smiling.x
A Warrior Woman full of Righteous Indignation on a Sunday Morning... now there is a sight to behold!
Juliet please know that l am so very proud of you!
I know it is fustrating, disappointing and insensitive but people sometimes are a little tactless and inappropriate without meaning to offend. A few years ago I broke my leg and was in a plaster cast my Mum took me shopping in a wheelchair several people spoke about me, over me to my Mum and I only had a broken leg!!!! X
Hi Juliet, I know exactly what that is all about. The worst thing was when doctors spoke to me instead of darling TJ. Fortunately he had a wonderful neurologist who not only spoke to him but got down on his knees to talk face to face and hold his hand at the same time. He included me in all decisions but it was TJ who he took notice of.
I know people want to try to help, but I don't know if they think before they talk.
Some didn't talk to TJ at all. Even though they are friends, they don't know how to handle the situation, probably because they have never had the experience to deal with anything like this.
I would just state that he was physically disabled not mentally disabled. As he had a fall which left him an incomplete quadriplegic made this even worse. We went through nearly three years of hospital and rehab before he was diagnosed with P.S.P. in March 2018.
Because of his spinal injury (which probably caused the spinal injury in the first place) this veiled a lot of the symptoms of P.S.P. The anniversary of his passing is coming soon on 17th May, 2019.
Frustration and sadness is always there but I could not wish him back the way he was.
He went through hell on earth and has to be in a better place.
We live in Australia, and even though a lot has been done to help the disabled, they still have a long way to go. Maybe the people making the planning decisions need to spend some time in a wheelchair etc. to experience what it is like.
The doctors have no excuse for not knowing to speak with their patient. I have had to step into the hall pretending I had to sneeze to break the spell. Now I will position myself somehow in the room so the Dr. cannot make eye contact with me. Grrrr.
We were so lucky because all the main professionals we dealt with spoke to Chris directly. In fact we generally found strangers quickly realised he could understand. It may have helped that Chris had a big smile right until the week he died. He also had a very direct gaze. He just couldn't speak much.
I have a grandson with Down Syndrome and am used to very wary reactions from strangers !
Enjoy China. I have also been there - with Chris. You will love it but I know I find it hard being with my loving family without Chris. It's 1 1/2 years now.
Juliet...Sorry but I had to have a little 'chuckle' at your post...just because the 'warrior' in you came out for your loved one...I feel exactly the same when I have had my sister out in the wheelchair..most people are helpful and accommodating but there are still those who 'raise their voice' thinking anyone in a wheelchair can't hear!! Good on you ...I am working at being more 'vocal' when it comes to my sister's needs!!
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