Madmouse's open letter to MNHQ about the treatment of those with disabilities on MN

[madmouse]

Dear MNHQ

I joined MN when I was pregnant with my lovely ds. That heady autumn with bump before such words as NICU, neonatal seizures, brain damage, cerebral palsy, speech delay, special school entered my vocabulary.

That was 5 whole years ago - and all that time MN has been a part of my life. Got a lot of support from my ante- and postnatal buddies and from experienced SN mums. Gave back where I could. Became ill with PTSD, found the MH threads, recovered, started to give support on the MH threads.

Now I've come to the point that the only thing stopping me from leaving MN is that I would let down people on the MH threads. Other than that your (MNHQ) behaviour today has been an eye opener and a bit of a final straw.

MN has become, like RL, a place where disabled people and people with disabled children are not safe, not treated equally and not extended the same courtesy and respect as those without disabilities.

What happened today is just a tip of the ice berg. Day in day out threads appear with the same old theme. AIBU to use this disabled space because my baby's maxi cosy is too big and the P&T spaces are full, AIBU to use the wheelchair space on the bus (those two appear weekly by and large), AIBU to think it's nice to be disabled because you get lots of benefits, AIBU to think disabled people have it easy, AIBU to think I should have a free car too seeing as that I pay taxes.

It goes on and on and on. And none of it is ever challenged other than by a small group of us who do all this fighting in RL too - because it affects us and our children.

There is such thing as discrimination. And you do have a duty to stamp it out. Hand off moderation is no excuse certainly seeing how quick you were to delete 2shoes thread when some of us started fighting back against the endless threads of threads which in turn are copies of last week's threads.

I am very disappointed. And I think you have some thinking to do.

Best wishes

...or are you SO well educated that you can read minds?....

Badvoc, there are people on this forum from all walks of life, all levels of education and from completely different cultural backgrounds. Of course it is depressing that they need to ask questions, but hell at least they are asking them! Rather than just bumbling along and not even bothering to question thier actions, remaining bigoted and selfish and never considering others. The OP in that bus post was wrong, really wrong, but now she knows that. At least she did bother to ask for clarification by putting the question in the first place, and received it. She returned, albeit on a new thread as the other was full, to say she had considered and taken to heart the responses and in the future would behave differently. All the rest was just a massive bunfight of unnecessary name calling and unpleasantness. There are lots of issues people are not clear on in this world. Which are massively important to others, and rightly so, as it has been so rightly put people campaigned for years to get this facility, it should not be misused. But, surely by not even allowing people to ask the questions, and demanding such threads are automatically deleted without clarification you are making this an eternal circle of hell. If people are wrong they need to learn how to be right.

Yes the OP in that post was wrong in doing what she did. But she and others learned from it because she bothered to ask. The kind of people who are the worst are the ones who don't examine the situation, the ones who don't ask the questions and don't try to live reflectively. All of us have done something where we have not been sure of the rights and wrongs of a situation - whatever it is, and have then learned from mistakes. It does not make us evil or bigots, simply uneducated. As parents we guide our kids every day through what is right and wrong. We learn throughout life as our experiences dictate.

I'm not saying you or anyone else who is disabled or a parent or carer of disabled child should have to answer all of this, but that MNHQ should step up in some way and deal with it. Possibly an FAQ as I mentioned before or some other way - does anyone have a practical solution?

I don't thing just deleting genuine questions from people at least making an effort to learn if they were wrong or find out what was right will help at all. It will just leave people confused and make them ask the questions even more because they won't understand why the threads or questions were deleted. We are not born with innate knowledge about these issues. This is learned knowledge and learned behaviour. There are good people out there who genuinely want to learn what the right thing is to do, if you are always angry with them for not knowing in the first place how will any ground ever be gained? I know there are trolls who flame but they are in the minority. What I am trying to say is can you not allow people to become better people?

They aren't a minority though sharklet.
Really they aren't.
And most of the time I can let it go.
But then every once in a while someone posts something so moronic about disability and prefaces their post with the statement that it is a"genuine question" as opposed to a question I would be ashamed of my 9year old asking and then others posters pile on and defend said person and then despite the thread being reported by many MNHQ decides to let the comments stand...comments that I and many like me think are unacceptable it is a "perfect storm" of crapness that makes members of the sn/sen boards feel (more) marginalised and separate and alone.
Does that answer your question?
Other than MNHQ actually abiding by the talk guidelines I don't know what else to suggest.....

so you were inferring i had better morals than you?

I am off to sleep. I hope that a solution is found.

HQ cannot delete questions because they're deemed by some to be too stupid to be asked. By that logic there's a whole pile of stuff I'd like deleted and plenty of my posts that others would delete.
2shoes - I'm sorry I know you're having a bloody awful time with this - but singling people out, hinting not naming so she can't answer back and saying you'll remember what they've posted is pretty shabby. Perhaps you might want to withdraw that post and of course I'll do the same with this one. What do you think?

This as all gone a bit unneccesariy personal.

Sorry about typing

She means me..guess I must have hit a raw nerve to get such a nasty response :)

Too nasty for me to dignify with a response tbh.

Badvoc and all the other ladies who this whole thing cuts so deep. I really wish there was a magic wand that would be waved to make all of this stop and your frustrations with people's attitudes would simply melt away because it would all stop. I'm really sorry if I have offended with my suggestions to help. I was looking for a suggestion to make to MNHQ because how things stand right now is clearly not enough. You need to not go through this again and again, but as I said people still do need to be educated, otherwise in rl and online it will never end. But my ideas have only come from a place of goodwill and a wish to see your frustration be abated in some way.

I felt so strongly about this that I emailed MNHQ to say that, while I agree that they often don't delete enough posts which are disabilist, the thread in question wasn't one of them.

The treatment of the original poster is diabolical, in my view. She wasn't being 'inflammatory' when she posted her 2nd OP. She was responding to her critics.

However,a is often the case, parents of children with disability not only shared how people like her were 'disablist' but also went on to suggesting things they could do, to make a point. A thread was even posted asking why people were jealous of people who used wheelchairs, which clearly was intended to inflame.

You know, when people start acting for oppressed groups in society, they always say 'slightly just wasn't to be treated equally', then, inevitably, some bright spark decides that because that group of people was treated badly in the past, they really deserve to be treated better than everyone else.

Suddenly, if you disagree with someone who happens to be disabled, of an ethnic minority, a woman, etc., then you are disabilist, racist, misogynist. Well, maybe. Or, maybe you disagree with something regardless of that.

I am grateful that people have campaigned for equality in our society I am grateful, for example, that I had a choice between mainstream and special school for my DD1 with SN. I am not grateful when people refer to special schools as babysitting services and are offended that SS still exist.

The militancy shown on these threads has, IMO, undermined the SN community.

Madmouse, I admire your intention with this thread. I wonder if you would have been more effective emailing MNHQ directly.

Perhaps she did Lougle
Perhaps she didnt get anywhere

Now what is she supposed to do

Lie down and take it?

I don't know, but the resultant behaviour odd some posters hasn't helped any.

Do you think she should do nothing?

ok, I have not read the whole thread, but can i just say a couple of things.

People with disabilities are still people, we have feelings and we desrve respect.

The problem with it is sometimes the worst disabilites can be invisable to "normal" people.

When I was 19 I had a chronic infection in my heart. (Please NOTE we have heart desease in the family and this went on for 3 years, I thank my lucker stars at the moment it has been whipped into submission) My then BF and I went on holiday as the docotors thoughts some sun and rest may help. I HAD to use the buggy through the airport as I could barely walk. We got spat at, jerred at, and generally made to feel like I should not exsist. Right up untill the point that DB asked the buggy to stop and stood up, he was 6ft 8, everything stopped dead, he was riding we me as I needed support to sit up right.

I had a very bad car accident many years ago that has left with broken veterbra (now a total of 7) in my spine. For the first two years, I walked in horrific pain, as the "docotors" told me that "there is nothing wrong with your back it is all your head" they pushed me to the point of insanity (almost) I was eventurally diagnoised after another fit (of yep got epilepsy from the car accident too) by a lovely orthopaedic surgen who was FAB! I walk very slowly with crutches cause I am too dam stubborn to give up and use a wheelchair.

The thing is maybe my parents brought me up better, but I would have stood up on a train or bus to let the elderly, pregnant or those appearing to stuggle, from being 3 or 4. In fact the last time I was back in the UK I did stand up to let a pregnant person sit as NO one else BLOODY would. IF you where on the train I hope you felt ashamed, (not the por pregant lady with high Blood pressure on her way back from the hospital)

The problem is simple being disabled make everything a task in its self. You want tea or coffee there are aids to help you make it safely, IF you can afford them and if you can use them. but you will still probably have to stand at the counter to drink it.

So yes we have access to funded payments, they are there to help with the ADDITIONAL cost disabled people to have to Bear. LIKE aids to make coffee, special cuttlery, wheelchairs, special foot ware, medication cost (if NOT elible for free prescriptions) the extra petrol of having to drive to the hospital 2 a week for appointments. Mum or Dad not being able to work as round the clock care is needed.

We do NOT get free cars, the car is paid for out of a funded payment, so it is no different to you financing your car, the only thing is these cars as specially adapted to help normalise our lives.

Disable spaces are not their to be close to the shop, they are there to help with getting people in and out of the car hence the reason they are extra wide. Yes it is an annoyance when disabled people use Mother and child. But remember it is Lot more annoying to be stuck in your car as you can´t get out, as someone is using the disabled spaces.

Oh and please think before you report one of us, for claiming fraudulently just because you can´t see a problem does not mean it does not exsist. DO you know the lenght of the forms, the docotors reports, the medical assesments the invassion of privacy from having to lie nacked on a bed whilst a "HCP" with no medical qualifications determins if your 20 docotors, consultants, nurses, etc might be being decived by little old you? But you can´t see it, so it must be a lie right? Try talking to us, try asking us, try thinking for a spilt second that disability fraud is below 0.5%! which means you need to report 200 disabled people to POSSIBLY get 1 person doing something wrong. But in the mean time thoses 199, have had to stop carers comming in, have had to cut back on medication, have had to the worry of being "interviewed", all to find out that they did nothing wrong.

Above all, remember everyone is one car accident, one stroke, one bad infection away from life being defined not in terms of the interlect, personality or gifts. BUT in terms of there walking aids, their funded payments, their disability. We stop to exsist in the eyes of everyone we become the disabled. Not so long ago it was the "black" now it is the disabled. Both are borne through predudice and lack of eductation, but we educate people everyday, could we please be entitled to a little peace, tea and sympthy in the evening on MN.

We are not The Disabled we are people who have a disability, try imagining what it must be like.

opps just reealised I missed something.

I am able to be stubborn and not give up my crutches even though it would be faster, easier and safer in a wheelchair. NOT everyone is that lucky.

I am stubborn, and was told to just go into a.wheel chair too, I wanted to keep going as long as I can. I do use a mobility scooter sometimes.

I am sad there were unpleasant exchanges yesterday.

I hope we can move on and find a solution.

Yep, I´, the same silly phase. I have to use wheel chairs for large areas, like airports. But the rest of the time I struggle on with my morphine etc to stay up right as long as I can.

I was ridiculed abroad and in the UK when asking for special assistance wheelchair service at the airport apparently I didn't need it. I cried abroad in the UK I suffered the humiliation of explaining the extent and complexiry, he felt bad after the damage was done by then and I again was in tears.

Same old same old isn't it?
Some posters think they know better than us what we should find unacceptable....sigh.
Free speech is great yadda yadda but that doesn't alter the fact sn/sen is the only area that is so lightly moderated.
Can you imagine posts about the mccanns and gina ford being so lightly moderated "in the interests of free speech"?
No.

Perhaps we should get ourselves a lawyer? :)

fabulous, heartfelt post, MummyinSpain, thank you for sharing your experiences, I'm sorry you have been through so much illness and pain in your life.

I think it is understandably an emotive subject for those who live with this issue day in day out, rather than it being an interesting moral debate point for half an hour or so.

I'm not trying to take sides here but I think it may be that some people fail to understand (as I would have before being educated about it) the relentlessness of the bollocks attitudes that people dealing with disability/ SN have to put up with on a daily basis. So that a seemingly innocuous comment on here might be ok for most people but for the person who has had to put up with it day in, day out for years and who may have had a particularly shite day that day (or week) and it might have been the last straw for them.

Doesn't make them bad, nor does it mean that they need to be shouted down and told that "it's all about them" - because, just perhaps, it isn't. But - equally - perhaps some days they themselves need to take a step back and realise that they've had a spectacularly shite day and are reacting more strongly than they normally would.

And I've probably pissed off both sets of people now, sorry.