7 Mar 2009

"Special Needs"?

What do people think of the term "special needs" to mean disabilities? I don't like it. I know it's in common use. Disabled children in UK schools who need them are allotted (often after a fight from their parents against intransigent education authorities) statements of special educational needs. When I lived in outer London, we used a toy library and went to a fantastic playgroup at the Project for Children with Special Needs. In fact, in my old Borough (Richmond Upon Thames) there are a whole load of services with the "special needs" label.

It strikes me however as an anachronistic term. I don't know of any disabled person who would describe themselves as having special needs, sort of like normal people but with extra, special additional needs. It is a term I think, only parents and professionals would use and usually only when referring to young children. It has a very infantilising ring to it, to my ears anyway.

I am asking these questions now as I recently learned (via jypsy and then on Dave Hingsburger's blog )of a Facebook group created to tackle the hundreds of other Facebook groups and pages whose aim/title mocks disabled people, groups started by people with a droll wit of almost Wildean proportions with titles like "Hott Retardz" (that's humour to test one's pelvic floor right there).

The group aiming to tackle the disablism and hate these groups engender is called, FACEBOOK: STOP ALLOWING HATEFUL GROUPS THAT MOCK PEOPLE WITH SPECIAL NEEDS

I have exchanged a few messages with the group's creator about the title and asking if she would consider changing it, while acknowledging the laudable aims of the group and her right to utterly discount anything I would have to say.

In a reply she explained that special needs is the expression she always uses when referring to her daughter and that she has asked "many friends with siblings and children with various issues and they prefer special needs."

I have to highlight here the expression, "nothing about us, without us."

It is not good enough to just ask parents and siblings. Disabled people themselves must be central to the issue and effort. There are plenty of disabled people who are happy to take part and explain their concerns on this Facebook group, but these people have not been treated well. I have witnessed 3 different disabled people come in to discussions on this group who have all been told that their thinking is amiss and that they need to learn from parents what the right way to talk about themselves is.

I have also seen many people (all parents as far as I can see) complain about the discussion on words and terms as distracting from action. This makes no sense to me when the point of the group is to tackle the use of words like "retard" used in offending ways.

I'm was also surprised to read her view that to, "many people we asked, disability had a more negative connotation than special needs."

Andrea Shettle posted publicly to the group, asking the same question politely and gently. She was attacked by one group member and told that she was being condescending and stuck in the seventies for preferring the expression "disabled people" or even "people with disabilities."
When I questioned this person's dismissal of Andrea's questions and meanings and pointed out that it might be worth listening to and learning from disabled adults, he told me that I must be happy to be spoken down to.

Amanda Baggs then stepped in with a detailed and powerful series of posts explaining all the issues about how parents have too often ignored and marginalised the efforts of self advocates, about the important role we have as allies, and how damaging it is (with several eye-opening examples) to claim that we parents are at the "heart of the disability community." She explained that her posts were lengthy as she has difficulties in summarising her thoughts and that she wanted to be as clear as possible on an important and complicated issue.

The same poster who had earlier been rude to Andrea now claimed untruthfully that Amanda was attacking him, he put words into her mouth (that she wanted to let people insult his child!) and he rudely called her long winded, but did not engage with a single thing of substance that she wrote.

Wanting to tackle disablist practices and injustice on Facebook is great, but it has to start in this group before I can be part of it or invite my friends to join. Nor can I be part of a group that thinks the very word "disability" has negative connotations.


gimpyblog said...

One of my very first forays into blogging was a foul mouthed rant at the language used to describe certain disabilities.

I'd rather people spent more time improving things for disabled people rather than wringing their hands over language.

Miss Gonzo Galore said...

I really enjoyed reading this, the word "special needs" always made me cringe, it's just so tacky and cutesefying!
Just because technically I do have special needs, doesn't mean I want to be called a "special needs" person. *shudders*

Absolutely mind-boggling how arrogant these people you mentioned are, and there's something I don't get:
Parents of "special needs" children always talk about how they're worried about their children's future, (understandable) so how can they refuse to let them grow up to become adults who can speak for themselves?

mumkeepingsane said...

I'd be open to an alternate suggestion. What language would be appropriate? I have, in the past, used the term "special needs" in regards to my son when I didn't want to tell the person I was speaking to that he was autistic (he's starting to understand that he is different so I'm trying not to share his diagnosis with absolutely everyone) but wanted to highlight that he needed help in certain areas. I can't imagine saying "my son is disabled" without getting specifically into how.....suggestions? Or is it ok when describing children, but not adults?

lisadom said...

It's funny, because I struggle with the term disability, when I see my kids as super-abled. Super able to run, climb, find the the unwashable marker and write on the wall, super able to stay awake until 1 or 2 am, super able to maintain a tantrum for 2+ hours, super decibled in that tantrum, super determined to win the point with the tantrum. My son is super-negotiating when trying to distract us from a point of disagreement, they both have super-visual memory (so don't move anything) there are a whole lot of supers going on.
They are also super healthy despite being super fussy and eating a super limited diet, and super super Bam Bam strong. At 9 and 11 they are individually able to support my weight and stop me moving when I want them to go somewhere.

Yes, there are challenges. Special Extra challenges. Communication was very hard to learn, body tone can be poor for Boo, motor planning the same, imitation of sounds is difficult for Bratty, learning to use a bathroom was very difficult for both of them. So maybe they needed us to be Especially precise in how we taught, and continue to teach them.

Knowing them, I know all this.
But when I meet an adult who appears to me to be intellectually or socially challenged, but who might seem to be rude or abrubt to someone I am with, I will say discreetly "I think they have special needs"

Special need of what I wonder?

it's a good question. But I think we have to be realistic and not so prickly. There are terms that offend us as parents which have more to do with our level of acceptance and understanding. In 2001; I wouldn't fill in my claim form for Disability Allowance until it was called Carer's Allowance. I just couldn't cope with it. My son couldn't give a shit. He just needed someone to pay for his Private Autism Schooling, with whatever money they could get. I got over it.

I just asked Boo what he thought Autistic means, whether he knew anyone who had autism, he replied "its stormy" And he is right- it is!

Sharon said...

@gimpy, nice rant mate! It's true that it's more important to figure out what the individual needs to get by as best as possible and sort that out. I think tackling hateful uses of language is worthwhile though, as it sets up low expectations for how the people described hatefully deserve to be treated.

@Miss Gonzo, perish the thought of giving you a cutsey lable!

@mumkeepingsane, I have used the term myself. When Duncan was 1st diagnosed, I felt hesitant about using the word disabled. He hadn't changed, but there was suddenly this word that I could apply to him. I feel entirely comfortable saying he's disabled now and I don't mean it as a reflection on him and what he can and can't do, but on how his way of working is not typical for the society we live in. He's disabled compared to what is typical and what is expected. That's all it means to me.

I don't always say he's disabled when I'm talking to someone and like you, don't feel the need to enter into a whole in depth discussion on his diagnosis etc. Then I might say, if it seemed necessary to say anything, that he doesn't speak much (say if he's ignoring someone), or that he has difficulty sometimes understanding language.
The problem I had with that group was not so much the special needs/disability terms, but the way in which the disabled adults who tried to explain their views were treated.

@Lisa, yes your kids are super and super-abled, as is mine and I have no worries in decribing some of these super-abilities as disabilities given how they impact on them and us, making many things harder or impossible that others take for granted. It's important to pick your times to be picky or prickly, when it could stop you getting money you deserve, then yeah, to hell with it, just give me the fookin' money. But when you're talking to intelligent and caring people who are on a quest to clear up hateful language, then gently describing the alternatives is worthwhile.

I've asked Duncan about autism a few times and told him that he is autistic. He says Mummy is autistic and Lady and Thomas and Daddy and Pippi. OK baby, if that's what you want!

Jax said...

disabled does seem to me to be a negative term, and I am always disinclined to describe myself so, even though I am partially deaf and should wear a hearing aid (it does increase my hearing markedly, but actually makes it more difficult to distinguish speech so not really worth it in the long run).

special needs by contrast has always seemed to me to be more positive, though surely every individual has needs which are special to them by virtue of being individual? Cutesy I know, but to me that's kind of what home ed is about, the ability to fit a specialised education to each of my children in the way that best suits them.

I recently attended a seminar presented by Dr John Biddulph in which he said he was no more a person with autism than he was a person with maleness, he is autistic, he is male. I thought this was interesting after I'd spent some time working for companies looking after autistic and/ or learning disabled people. I do think though, that different individuals feel differently about it, so we aren't ever going to find one term that everyone accepts.

The Biologista said...

That group certainly don't seem to be starting out on the right note... dismissive of parents and of the disabled themselves. Who exactly is there left to represent?

I had a discussion with a creationist while back in which he claimed Darwin to be a bigot because of his use of the word "savages" to describe native tribes and "imbeciles" to describe the disabled. He didn't know of course that these were the PC terms of the day, later appropriated by those who already saw natives and disabled people as something worthy of mockery.

It happens time and again that the words we use to describe people open to victimisation are hijacked to become pejoratives. Connotations matter, certainly, but I think the spite of the speaker is the real deal-breaker. We flinch at "retarded", but its meaning is not much different to "disabled". We've just heard it spoken in ignorant hatred too many times.

Ultimately, as you say, the thing that matters is what the disabled want to be called. It hardly matters if we're offended on their behalf if they're satisfied enough with a given term.

Miss Gonzo Galore said...

OK, I just finished reading that whole facebook discussion thread. (Took me a while)
That Dennis guy really is such a condescending w....r, grrr.
I loved your response and Amanda's description of the wording issues, so anyone confused about labels, I really recommend reading her elaborations, even if they are monolithic.

I especially liked this:
"The fact is that there are things non-disabled people can't do. At all. The reason that they are called non-disabled is not because there are no major abilities that they lack. It is because the world caters to everything they lack, bends over backwards to make up for it.

Disabled people stand out as disabled not because we innately lack the ability to do something (everyone lacks the ability to do something major), but rather because society does not plan for and cater to us the same way it does to everyone else."

Club 166 said...

While we usually refer to Buddy Boy as autistic around the house, there have been times when I've used "special needs" to refer to him when I didn't feel it was appropriate to get into specifics.

While it certainly doesn't hold the same connotations as the "R" word, like any language it may be twisted at some point.

Special needs is probably a term that's best reserved for kids, as I think that everyone would agree that all kids are "needy", and so when some have "special needs" it's not that big a deal. While the same could be said of adults, I think we tend to assume that all adults are independent, so if we referred to them as having "special needs" it might needlessly infantilize them.

Hope that made sense.


VAB said...

These terms change continuously and will continue to do so. What seems good today will seem outmoded in ten or twenty years time. Given that there cannot be a perfect permanent term, when choosing a term, what is important to consider, upon each individual use, is how well that term will convey the meaning you want to the listener or reader.

Miss Gonzo Galore said...

Wow, I just saw that they did change the name of the group after all, and what a great compromise they found.

Sharon said...

@Jax, home-education is great for allowing us to give each child an education optimised to meet their needs, all of them, whether they have an impairment or not since yes, they're all special. This is something schools can't manage as they have to cater for the average, the majority.

How each person refers to themselves is entirely up to them. If I'm talking to someone who prefers to use particular term, I'll use the same one back to them. It's interesting that you think of disabled as a negative term. To me, it just refers to the fit between a person and their society/environment.

@Biologista, people on the group were not so much dismissive of parents, it's predominately a parent led and parent populated group. There were a few incidences of disabled people being mistreated, though the people doing it didn't seem to be aware of what they were doing wrong.

Words do change, and meanings change. Retarded isn't a bad word, except (imo) when used to mean pathetic and useless. Intent matters too. It seems that the best way of knowing what language to use is to listen to those who are in the group we're trying to describe and see what they prefer, rather than some self appointed group seeking to "protect" their delicate sensibilities.

@Miss Gonzo Galore, Amanda's writing on that discussion is fantastic. I'd recommend that anyone interested in learning a bit about disability concepts read what she wrote.
Your recent blog post is great too, you've nailed the way people complain about "labels" which are just descriptive words that describe part of a person, there's a nice bit about groups reclaiming offensive terms and the illustration of disability through the Audrey Hepburn film is very well put.
Basically, everyone must go read it!

Thanks for letting me know about the name change too. I'm still too disappointed in the way the initial affray evolved, and in the owner's messages about how she was sent mean-spirited and hurtful emails from disabled people asking for the change, something I really doubt.

@Joe, I do the same when referring to Duncan and usually think of special needs as a term referring to children, though it's not one I use (though I might have a few years back, can't remember.) What you said does make sense to me.

@VAB, yes I agree. These terms will no doubt change again. I think that up to now, disabled people have had the terms used to describe them applied from outside by doctors etc. It seems to me (from the little I know) that it's only relatively recently that the disability advocacy groups have emerged to represent themselves and make it known how they want to be referred to.

Ruth said...

My two eldest prefer to be called disabled. However my youngest autisic sons think it is everyone else who is disabled. Pity another group with more respect for the disabled couldn't be set up.

Jean said...

i know I'm VERY late to this thread, but I really feel there ae more important things to get fired up about. My little lad is special. So are my other 2 non-asd kids, but the Toad occupies a place in my heart so deep that i never knew it existed...that's special.
it's just a word, and a pretty benign one at that.
We have other more malignant words to get mad about (the "r" word springs to mind). lets pick our fights

Sharon said...

@Jean, never worry about being late, I'm glad you're able to be involved.
I'm sure your boy is special, as is mine. While I don't personally like the term special needs as synonymous with disability, I agree that it's not worth getting fired up about it's usual use in schools and in children's services, though I'll still express my dislike.

What happened with this group back when I wrote the post is different. The group was set up to tackle instances of facebook users denigrating disabled people of all ages. I didn't mind the creator disagreeing with me, but I did mind the way the disabled adults who expressed very detailed and well thought out preferences for alternative language, were silenced and marginalised, even in a group supposedly set up to tackle disability discrimination!