To be sick of hidden disabilities getting overlooked

(125 Posts)
ProudAS Wed 02-Jan-13 16:59:42

We've got a massive great thread on this board about accommodating wheelchair users on buses but I don't recall seeing anything on such a scale about hidden disabilities such as autism.

Tourist attractions, hotels etc nearly always publicise how they can accommodate visitors who use a wheelchair or guide dog but nothing for those who may have difficulty with crowds, need routine etc.

A friend of mine who has Aspergers got ridiculed by his employer for it and bullied out of his job. I doubt that colleagues would have stood by and let someone with a physical disability be treated in this way. His condition also meant that he couldn't face going to a tribunal.

Another ASD friend got forced out of a job because he was having difficulty dealing with people. The employer's attitude being that he could be "normal" if he tried hard enough.

A local man with autism got forced off a bus after failing to understand a figure of speech from the driver who then jeered at him along with other passengers and told to pull himself together.

Despite having Aspergers myself I got accused of being anti-disabled after saying that a wheelchair user had made a nuisance of himself. The statement had nothing to do with his disability and everything to do with his insulting and bad mouthing my colleagues.

Parents whose children have autism/ADHD being called bad parents because of the way the child is or abruptly told to give them a good clout to cure them. Explanations about the child's disability get met with "He doesn't look disabled!". I don't remember the last time some one was called a bad parent because their child was visually impaired or told to cure their spina-bifida with a good clout.

Worker at theme park saying that he could only allow a disabled person and one other individual on to ride through the exit to a group of 4 (one of whom with ASD/anxiety and another in wheelchair) and expected person with anxiety to get in crowded queue whilst allowing wheelchair user on.

DH's aunt (who knows I have ASD) saying it was extra good to see BIL at family party when he had recently had surgery. Seeing me was only good despite awkwardness with social situations.

CloudsAndTrees Wed 02-Jan-13 20:56:02

Amicissimma I'm sorry to have to ask, but would you mind explaining why it would be better if you consultant didn't sit with his back to the window please? I've tried to work it out but I'm struggling!

SirBoobAlot Wed 02-Jan-13 20:57:48

We really don't need to turn this into a battle over who has it easier. Everyone who is disabled, whatever the extent, suffers.

I have a handful of conditions. If I line them up after my name, I look very educated wink Two / three of them cause me to be on a stick or two at all times, and a wheelchair when needed / when I can. Sometimes people are great when hearing I have invisible health conditions. The amount of times people have smiled at me patronizingly when in my chair... I remember very clearly being outside the Globe with some friends before a performance, we went to an ice cream van. He took everyones order, then smiled down at me, and then said, "And what would she like, then?" to my friend. "Nothing from your fucking van!" or along the lines was the sharp reply from all of us. The irony was we were actually on an outing from a psych unit grin

Seriously. Each of us - or the person we love who is affected - faces battles every day. Let's not add to that by saying that a type of disability is 'easier', because they are all bloody hard work.

44SoStartingOver Wed 02-Jan-13 21:11:06

I think if you have the light behind you, it can cast a shadow and make it harder to lip read.

I think that is the case, because I lip read more than I realise and cannot hear properly without my specs!

Only a guess - so happy to be corrected!

44SoStartingOver Wed 02-Jan-13 21:14:16

On the positive side, I do some work with local police, who are trained to look for autism cards if an adult appears to behave in an unconventional manner.

There is actually a great deal of understanding that sometimes people may not be able to communicate very effectively, or not make eye contact or answer direct questions, but are not trying to be difficult. This has saved a lot of grief for people.

what DD2 would like (as a 14 yo who faints regularly) is for people to actually listen to her when she says she's OK and for people to please give her space, and not just assume that because she's a teenage girl, she either doesn't eat, or is drunk or on drugs. And that when her friends don't know exactly the name of her medical condition, don't assume that everyone is lying about there being one, in order to cover up the anorexia/drink/drugs you've assumed.

A medic alert bracelet and laminated info cards should give you a clue.

Fakebook Wed 02-Jan-13 21:30:07

Legoland let children with autism and other non visible disabilities through to the front of the queue.

FolkElf Wed 02-Jan-13 21:36:14

44 yes you're right. If you are illuminated from behind it means your face is darkened and in shadow which makes it harder to lipread.

AmberLeaf Wed 02-Jan-13 21:42:45

We've got a massive great thread on this board about accommodating wheelchair users on buses but I don't recall seeing anything on such a scale about hidden disabilities such as autism

Really?? where have you been grin

Another one here to say that I don't think we need to have a them and us situation here between visible/invisible disabilities.

United we stand and all that.

ProudAS Wed 02-Jan-13 21:56:33

I don't want a them and us situation and have found people with physical disabilities to bepretty understanding.

Understanding in general has come on but still a long way to go.

MrsHoarder Thu 03-Jan-13 04:41:24

Thank you for the explanation about not speaking slowly, I'll avoid doing so in future. And feeling a bit daft now.

TheNebulousBoojum Thu 03-Jan-13 04:52:37

Why feel daft? You thought you were being helpful and considerate, now you have learned something new and are prepared to remember and act on it.
You sound thoughtful, not daft at all.

sashh Thu 03-Jan-13 05:25:53

* I doubt that colleagues would have stood by and let someone with a physical disability be treated in this way.*

Don't doubt it. I was bullied out of a job, before the DDA so couldn't do much about it.

misterwife Thu 03-Jan-13 05:55:05

I've been both visible and invisible - I was 2 months prem and have CP (diagnosed in toddlerhood) along with TS (diagnosed in adulthood a few years ago, complex vocal/motor tics, sweary kind, thankfully reasonably manageable compared to others I know with the condition). HFA was suspected in early childhood because of epic, epic temper tantrums/being able to read the Times at three years old/playing 'beat the till' with mental arithmetic, but never diagnosed. I have been in a wheelchair, and not in a wheelchair. I have been treated incredibly accommodatingly by some people, and incredibly rudely by others. I have a decent life. I have a DW and an almost-DD (due next month). I avoid mentioning my disability unless someone asks.

I have discovered a few things:

1) People tend to be very resistant to acknowledging hidden/invisible/less obvious (delete as appropriate) disabilities unless they have those disabilities themselves, or have a relative or close friend who has them. If you are one of the rare few who does acknowledge the presence of said disabilities without having some kind of personal link to them, then yay for you!

2) People have -enormous- problems with seeing anyone getting out of a wheelchair and walking. The idea of a disabled person's situation changing from day to day, from hour to hour, even from minute to minute, is alien to far too many people, and to the authorities, too.

3) With disability, there is no such thing as a middle road in terms of the reactions you get. People either bend over backwards to help - sometimes in a way which can be embarrassing - or are ignorant/dismissive/downright offensive.

Rudeness and ignorance are everywhere. All we can do is find whatever support networks we need. There is no 'them and us'. There is only 'we'.

Finally, I was very annoyed to read about what happened to PandaOnAPushBike. That kind of hair-splitting is unnecessary in the extreme, and symptomatic of the semantic and pedantic battles that cause petty divisions at a time when people with every kind of disability are being treated very shoddily indeed. Don't we need to club together?

MummytoKatie Thu 03-Jan-13 07:16:14

Yanbu but I will say that things have improved so so much in the last 25 years. (My db is a severe nut allergy sufferer who was diagnosed in the late 80s.)

Bonkerz Thu 03-Jan-13 07:24:34

My son aged 12 has ASD and has been told he cannot attend a local youth group even with a carer. He is 'normal' to look at but struggles to choose activities and is very vulnerable. I have agreed to pay a qualified/insured carer to take him but the group are saying this is possible. I wonder if he needed a carer to push his wheelchair if they would so readily turn him away?????

misterwife Thu 03-Jan-13 07:32:30

Their negative attitude stinks - I wouldn't be bothering with that youth group if I were you. I had nightmarish experiences with a similar one when I was that age - they didn't know how to cope with me at all. Try to find another one.

Proudnscaryvirginmary Thu 03-Jan-13 07:40:16

I agree that there should be far more education on different types of disability - I was embarrassingly, shamefully ignorant before I joined Mumsnet. Having a mother who glared or tutted at 'mmisbehaving' children in an intolerant way when I was growing up didn't help. Now I look at situations so differently and am less judgemental and I hope more helpful.

threesocksmorgan Thu 03-Jan-13 07:54:48

I agree with the posters who say it shouldn't bea them and us.
I get very fed up with this, it almost implies the if you are a wheelchair user it is some how easier.
it isn't, dd is nearly 18 and uses a wheelchair, she needs someone to meet all her needs. she can't walk or talk or feed herself, she needs hoisting.
we go to some where that is wheelchair accessible, and find all it means is one ramp!!
then we can't access anywhere else.
it should never be us divided, we the sn community should all stick together.

cory Thu 03-Jan-13 08:33:48

" I wonder if he needed a carer to push his wheelchair if they would so readily turn him away????? "

Quite possibly. Dd's school "forgot" to book her onto the school trip until I made an unholy stink and then they insisted I come too (at a few hours notice!) because nobody else wanted the responsibility of the wheelchair. I had to lift her out in the bus, because they had "forgotten" to book a bus with access.

We were told that statements and learning support were only for children with learning disabilities and that there was nothing for children who missed out on their learning due to pain and mobility problems.

Plenty of hate crimes against wheelchair users in recent years, sadly.

The haters and the scrooges have a lot to gain from dividing us against each other.

JakeBullet Thu 03-Jan-13 08:36:18

Bonkerez.....I'd say that youth group are breaking the law to be frank and need calling on it. Dreadful.

I totally agree with threesocks; this should not be about division....we need to be united. All our children are growing up in a world where discrimination exists and only by uniting can they tackle it. My DS's friend has complex health needs and uses a wheelchair. He might not be able to shout about discrimination but by God I will make sure that my DS can do it for him.....and also for himself.

Disability is facing real challenges at the moment with lots nasty judgemental people deciding what is and is not a disability. Our children are facing an uncertain future....and yes those with hidden disabilities are at risk of being sidelined here. Make no mistake though that those with visible disabilities are also being challenged and care packages are being cut. We need to be united.

OP the stuff you posted is shocking and YANBU to feel angry about it....I do think though that those of us with personal experience of disability need to be united against all forms of discrimination.

misterwife Thu 03-Jan-13 08:46:54

'We were told that statements and learning support were only for children with learning disabilities and that there was nothing for children who missed out on their learning due to pain and mobility problems'.

Did they really say this to you? It's bobbins. Any more suspect incidents from them and I'd be finding ways to take them to court.

cory Thu 03-Jan-13 08:51:42

It's in the past, misterywife: dd is now at secondary and getting adequate support. But this is what I was told by the LEA representative and I've had it confirmed from elsewhere that it's general policy in our LEA. The school told me that if I was dissatisfied I would have to take them to court and sue them for breach of DDA. Which I would have done, had not the HT been due for retirement and dd due to move up to secondary.

It's still doesn't make for equal treatment, though, if all parents of physically disabled children have to go through an exhausting court case whilst there is provision set aside for children with other types of disabilities- though I am well aware that not everybody with learning disabilities gets that money either.

FolkElf Thu 03-Jan-13 09:10:59

MrsHoarder Don't feel daft! It's one of those things where until you've been told you don't know.

I did a BSL module at university and then followed that up with level 1 BSL afterwards.

Now I have a young profoundly deaf relative and a daughter with mild/mod hearing loss. So that experience has come in handy (don't use BSL with them, but certainly being 'deaf aware' helps). I take it for granted now but I have to remember that most hearing people don't know how to communicate with deaf people because they are never told.

I tried doing some deaf awareness and signing with some year 6 children I taught once and I was shocked that some of them didn't even know what 'deaf' meant. Some of them thought I was mispronouncing 'death'.

threesocksmorgan Thu 03-Jan-13 09:18:41

dd mises out on a lot due to lack of space.
so she will go to the sn youth scheme. but can't go swimming as only one wheelchair can go at a time.
no problems for other disabled kids, as they only need a seat.
we could all cherry pick a story.
but at the end of the day. we should all stick together.
see my dd swims weekly at her sn school, so missing that although a shame, is not that bad. another child might never get to swim normally.....swings and roundabouts
all threads like this do imo is allow the nt world
to divide us. we should all be together.

fuzzpig Thu 03-Jan-13 09:52:01

YANBU, and I don't really get a vibe of 'visibly disabled people have it easier' from this thread - just that there are some different issues sometimes.

My life has been turned upside down this year (erm, last year) in that I have been diagnosed with one hidden disability (CFS/ME), and soon I am having an assessment for another (Aspergers). I have also had other mental health issues for most of my 26 years.

A lot of my issues are anxiety related anyway, so I feel constantly on the defensive for example on public transport. I worry the whole time, say if I am sitting in a priority seat because due to pain/dizziness I can't face walking to the back of the bus that day, that I will need to snap "but I AM disabled." I haven't actually had any comments thank goodness, but I have a list of responses ready, and the Aspie tendency to repeat things over and over in my head means that I get very worn out and stressed.

I also have big issues with spatial awareness and I am always the one who gets the nasty sarcastic "you're WELCOME" type comments because I bump into people or accidentally cut in a queue or don't say thank you to somebody holding a door because I genuinely don't see them, or don't realise what they are doing. The worst one was actually when I walked out of a lift and didn't hold the door open for a lady in a wheelchair (who was with somebody else) because I just didn't think. She shouted back "oh don't worry about me" - I genuinely hated myself for days after this. It was actually one of these incidents that finally broke the camel's back so to speak, it was almost a year ago now, and I was reduced to tears and came home early from an otherwise lovely day out, and started drafting the "What is wrong with me" thread that led loads of people to tell me "you're an Aspie". Certainly I don't hate myself as much any more because I know there's a reason behind a lot of my issues, but it doesn't stop me panicking that everybody I meet assumes I'm just rude.

Work has been interesting. I told them as soon as I'd got a referral about the Aspergers, and they've generally been quite supportive. Not so much with the CFS. I know it is really frustrating that I have missed a lot of work, but even though I'm now diagnosed, Occ Health are still saying it's not a disability. They are also very insistent that the few 'reasonable adjustments' (which basically amount to... a chair! Which really does help) I have been given are temporary. But there is no way I will be able to stand for an hour (I have postural orthostatic tachycardia syndrome as a symptom of CFS, which means on standing my heart rate rockets and my BP drops) even on a good day. I'm really scared, and I've lost all the confidence that the job gave me.

On a more positive note - I went to my local Cineworld recently, and noticed a sign for Autism Friendly film screenings - few and far between at the moment but it looks great and hopefully it will grow.

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