Advocates and allies

I had originally planned for this post to be an in-depth look at what it means for a non-autistic person to be an advocate or ally for autistic people.  There has been a lot written on the subject over the past couple of months and I was going to use this as a way to sort it all out in my mind.  Luckily (especially for you, since this post is now much shorter), a recent discussion on this blog helped me understand it all in a nutshell.

In a comment to a recent post, CS had the following to say about the vaccine-autism debate:

The vaccine argument is causing a lot of harm I believe because it is taking our limited time we have in the news and monopolizing it with trivalities (sp?) that aren’t important for inclusion, education, opportunity, independence and safety which is what most autistic people struggle with their entire lives.

This came toward the end of a long comment discussion concerning Kristina Chew‘s appearances on Newsweek.com and NBC’s The Today Show last week in which she was asked, as the mother of an autistic son, her opinions about vaccines.  (The media interest was due to the recent release of Autism’s False Prophets.)

In my original concept for this post I had considered using Kristina as an example of a good ally for autistic people, using Phil Schwartz’s list of what makes a good ally as a starting point.  CS disagrees with me, and believes that she is “not being a good ally when she does these things.”  He also uses Phil’s essay as the basis of his opinion.

Read the whole comment discussion for the whole picture, but the gist of CS’s complaint was that Kristina was being self-serving, and not being a good ally for autistics, because she engaged in – and reported on – the interest in the vaccine/autism question instead of reporting on the lack of interest that the mainstream media has for hearing from autistic people about what is important to them.

Here is an excerpt of my response to CS from that comment discussion:

The vaccine argument is causing a lot of harm, but not because those who don’t believe in a link are engaged in the argument. It causes harm because it exists. Those who try to squash the belief in a link between vaccines and autism may not be engaged in the type of activities that directly benefit autistics, but if no one puts down the belief in a link by the general – scientifically illiterate – public then many of those direct actions will likely come to naught.

The non-autistic people, especially parents, who believe in the link are not likely to listen to scientists, non-believing celebrities, or autistics when it comes to arguments against a link. Those with the most chance to sway their opinion are the parents – the non-autistic parents – of autistic children and adults.

What do you think?

And if you are autistic, who among the non-autistic do you see as true advocates, as good allies?  Are there any?  Despite what Phil tries to get across in his essay, is it even possible for a non-autistic to be an “autism advocate” or a good ally?

Update:  As a reference, here are some of the things that have influenced me over the past couple of months.  In some cases it is the post itself, in some cases it is the discussion in the comments:

I’m sure there are more, but these are the ones that stand out in my mind.

Prenatal testing and disability rights

An underlying theme of The Speed of Dark is disability rights in general, but more specifically autism rights in a world where the genetic cause of autism has been determined and a prenatal “cure” is given to any fetus that is found to be autistic.   Of course, here in the real world we aren’t at that point – yet.   But we’re getting there.

Since reading The Speed of Dark, I’ve picked up Prenatal Testing and Disability Rights to try to get a more detailed understanding of the various opinions and considerations around the question.  I’ve given this some thought before – I posted the following as To hear or not to hear, is that the question? in September 2006 – but it’s a big question deserving a bit more thought.

= = == === =====

In the world of autism the question, “If there were a cure available for you or your child, would you use it?” is pretty much rhetorical, food for thought. As such, discussions are more theoretical than practical. In the world of the deaf and hard of hearing, however, cochlear implants mean answering this question has much more practical implications.

At first thought for most ‘hearing’ people (here we go with labels and descriptors again), a technology that would allow or restore hearing seems to be a no-brainer. I think that most hearing parents of deaf children would jump at the chance to make their kids “not deaf.” (For now, I’m going to ignore the fact that the results of cochlear implants vary person to person.) As those kids get older, though, the question becomes a bit more complicated, as the kids (and then adults) establish their identities in the context of the deaf culture. (For a similar discussion of the impact of age on the decision to apply/impose a cure, see my earlier post Thoughts on curing autism.

There are many similarities in the arguments on both sides, and I think that the debate in the deaf community may offer some insights into the same question for autism. For example, the following description of different perspectives could very easily be applied to the question of curing autism:

The (deaf community’s) perception is that there’s nothing wrong. There’s nothing that needs to be fixed. Our perception is, there is something that needs to be fixed. So from the very foundation, we’re diverging in our perspectives.

A Google search on Cochlear Implant controversy brings back quite a few listings, here are some examples of comments in the debate:

  • The controversy over cochlear implants in children has many sides. For some in the deaf community, CIs are an affront to their culture, which as they view it, is a minority threatened by the hearing majority.
  • The technology seems like a medical miracle to many hearing parents and doctors who see the technology as a cure for deafness. But the cochlear implant has long been the center of a stormy debate. Some deaf advocates worry that the view of deafness as an illness to be cured marginalizes the deaf and stigmatizes those who can’t –or don’t wish to–use an implant.
  • Most doctors schedule the procedure as soon as possible in young children to increase their odds of acquiring oral language skills. But some deaf advocates worry that hearing parents may wind up making a choice their deaf children would not have made for themselves.
  • That view of hearing loss as pathological is at the heart of the cochlear controversy. On the extreme end, some deaf advocates who communicate only via sign language and shun any attempt to learn oral language, view the device as a threat to their unique, sign-language-based culture. But even to those with far more moderate views, the cochlear implant is a symbol of the hearing world’s desire to “fix” deaf people.
  • The conflict concerning cochlear implants is centered around the definition of disability. If deafness is defined as a disability, in the eyes of many, it is something to be altered and repaired. According to the medical view, deafness is a disability. On the other hand, if deafness is a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today’s society, should be readily accepted and supported. This opinion is based on the cultural view of deafness. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.
  • Altering a deaf child with surgery at an early age would only cost money once. In contrast, providing interpreting, note taking, and assistive technology would not only continually cost society money; these practices would also create inconveniences for others because of the language barrier.
  • Those who oppose the use of cochlear implants do so for several reasons. These people challenge the supporters of cochlear implants by asking questions such as, “What is normal?” and “Do the quality and quantity of the benefits outweigh the risks involved?”.
  • Parents, confronting a new diagnosis of deafness, react with a wide spectrum of emotions including denial, guilt, the need to blame someone, and the need to find a miracle. Doctors and parents tend to see the child as missing something and view the deafness as a disability that must be fixed to make the child “normal” or whole again. This attitude can have serious social and emotional implications. A child who is told she is “broken” and needs to be fixed will forever see herself as less of a person because of her deafness.
  • The problem is that 90% of deaf children are born to hearing parents. In many cases, these hearing parents may have never met a deaf adult. It is common for parents to be introduced to a number of audiologists and speech therapists when their child is first diagnosed with a hearing loss but to never be taken to meet a deaf adult so that they may receive the other perspective. They are told that something is wrong with their child. It may never be mentioned that deafness is considered to be a cultural identity for some people and that implants are seen as unnecessary. The parents of the deaf child, wanting only what is best for their child, will want to make sure that the child has the opportunity to succeed. If all they have been told is that the child will need to speak to function and that there is a procedure that can provide this, of course they would want the implant. To the parents, it is seen as the instrument of success.
  • Et cetera.

===== === == = =

The only way to get the best of an argument…

… is to avoid it.

That is the first of 12 suggestions from Dale Carnegie on how to “win people to your way of thinking“. A couple of the others that I really like are:

  • Show respect for the other person’s opinion. Never say, “You’re wrong”.
  • If you are wrong, admit it quickly and emphatically.
  • Begin in a friendly way.
  • Get the other person saying, “Yes, yes” immediately.
  • Try honestly to see things from the other person’s point of view.
  • Be sympathetic with the other person’s ideas and desires.

In many ways, these remind of what I understand to be the basic attributes of diplomacy and negotiation. Obviously, there may come a point when these efforts fail and other, more drastic, approaches need to be taken.

Some would say that we are already beyond the point that these types of approaches can be of value in ongoing debates surrounding autism and autism advocacy. But I don’t believe that.

What about you?