30 June 2006

Focusing on what we have in common

Declarations of a fixed opinion, and of determined resolution never to change it, neither enlighten nor convince us. Positiveness and warmth on one side, naturally beget their like on the other.

-- Benjamin Franklin
I had originally planned for this to be a short post to let everyone know that 29 Marbles is going to go on summer hiatus. As you can see, though, this is anything but a short post. A couple of things have come together in my mind over the last week or so that have led me to feel the need to make a few more parting remarks.

Here in the US this is an election year, which means that partisan politics is everywhere in the news. Much discussion about the value of the proposals, etc, but also quite a bit of discussion (as always) about the nature of partisan politics. Is it good? Is it bad? Is it necessary, or could we get by better without it? Some say it is vital, some say it is the root of all evil in the world today.

These thoughts were on my mind this past week while getting my daily fix of blogs, and I couldn't help notice - as Wade Rankin has - that the autism community seems to be becoming increasingly partisan. Maybe it has always been so, and I'm just now becoming aware enough of the larger autism community to realize it. But even within the sub-communities of autism I've been part of I've noticed a hardening of opinions by many people. Intentionally or not, quite often this comes across as, "I'm right and you're wrong, why can't you just see that?"

Maybe this is an inevitable result as people explore a question, examine their beliefs and understanding of the question, and decide how to move forward. After all, at some point you do have to act, and that is infinitely easier if you have a clear understanding of what you believe and don't have to worry about changing what your doing later because your beliefs change.

The other thing that happened this week is that I finally finished Walter Isaacson's biography of Benjamin Franklin (which, by the way, I heartily recommend to anyone who is interested in Franklin or the history of the 18th century). Of all the great things that Franklin did in his life, the impact he had on the writing of the US Constitution. It's not that Franklin wrote the Constitution - in fact, he was quite opposed to some of the final decisions that went into the document. Instead it was his role in getting the 13 states to open their minds a bit and actually listen to each other and compromise when necessary that resulted in a successful Constitutional Convention.

Like the early United States, the autism community is divided into several independent 'states', each with their own opinions, desires, strengths, and weaknesses. There are many differences, but there are also many similarities. Much of the dialog today in the autism community - I include all the blogs, organizations, support groups, &c as part of this community - seems to me to focus on the differences between the various sub-communities.

Maybe the differences between the two major parties in this debate - those who advocate neurodiversity and those who advocate a cure - are irreconcilable, but it seems to me, as a parent, that we all share the goal of making sure that there is a place in society for our autistic children and that they can find that place. To that end, I believe we need to find common ground and work toward that. Only by keeping dialog and discussion open, and really listening to what others have to say, can we achieve this.

Though this blog is going on a break, I will still be online this summer and I expect you will see me writing in comments to others' blogs. Have a great summer everyone (and for those of you south of the equator, I hope your winter isn't too harsh).

From Franklin's closing address to the Constitutional Convention:
I confess that I do not entirely approve this Constitution at present; but sir, I am not sure I shall never approve it: For, having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions even on important subjects, which I once thought right, but found to be otherwise. It is therefore that, the older I grow, the more apt I am to doubt my own judgment and pay more respect to the judgment of others.

Most men, indeed as well as most sects in religion, think themselves in possession of all truth, and that wherever others differ from them, it is so far error. Steele, a Protestant, in a dedication, tells the Pope that the only difference between our two churches in their opinions of the certainty of their doctrine is, the Romish Church is infallible, and the Church of England is never in the wrong. But, though many private persons think almost as highly of their own infallibility as of that of their sect, few express it so naturally as a certain French lady, who, in a little dispute with her sister said: "I don't know how it happnes, sister, but I meet with nobody but myself that is always in the right."

In these sentiments, sir, I agree to this Constitution with all its faults - if they are such - because I think a general government necessary for us.... I doubt, too, whether any other convention we can obtain may be able to make a better Constitution; for, when you assemble a number of men, to have the advantage of their joint wisdom, you inevitably assemble with those men all their prejudices, their passions, their errors of opinion, their local interests, and their selfish views. From such an assembly can a perfect production be expected?

It therefore astonishes me, sir, to find this system approaching so near to perfection as it does; and I think it will astonish our enemies, who are waiting with confidence to hear that our councils are confounded like those of the builders of Babel, and that our States are on the point of separation, only to meet hereafter for the purpose of cutting one another's throats. Thus I consent, sir, to this Constitution because I expect no better, and because I am not sure that it is not the best.

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27 June 2006

On the internet, nobody knows you're autistic

Consider the following excerpt from an autism advocacy blog:

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.
Was that written by a man? Or a woman? Young or old? Black or white? Autistic, or not?

In my line of work, I spend a lot of time on the phone and on e-mail. It is safe to say that I've never met, and will likely never meet, as many as half the people I interact with in the course of a day, week, month. Occasionally, however, I do meet face to face someone I've known virtually for a long time. Without fail, my thoughts of what they will be like are completely wrong. (Imagine your favorite radio DJ, then look up their picture online: you'll see what I mean.)

I imagine the same is true of my friends and acquaintances on the web. In the cases where I have actually met some of these folks, it has definitely been true. Unfortunately, the norm in our society is to allow a person's physical appearance and behavior affect our impressions of that person. In the case of autism, especially what is commonly - though mistakenly - referred to as 'low-functioning', this is especially problematic.

The beauty of the internet is that your physical appearance doesn't matter. Your method of communication doesn't matter (granted, this is mainly because everyone communicates the same way online). People accept you - or not - for what you say, for who you are. Not what they think you should be capable of because of how you look or sound. We can only hope the offline world catches up.

BTW, the excerpt above comes from the Ballastexistenz blog. For an example of someone caught in the act of judging by appearances, check out Kev Leitch's post If Someone's Not Broke, Don't Fix Them.

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23 June 2006

New accessible gadgets

This post doesn't really have anything to do with autism, but the emphasis on making these gadgets accessible to those in wheel-chairs caught my eye. Both of these are from the Wired magazine Gear Factor page today.

Wheelchair accessible gym machine: Designer Ryan Eder has designed the Freemotion Access, a strength-training machine not too unlike those at most public gyms, but with modifications that make it accessible to wheelchair-bound and able-bodies patrons, letting everyone get a workout.

Car for disabled drivers: The electric mini-car, designed in Hungary, has no front seat; a hatchback opens, allowing the driver to roll his/her wheelchair into driving position. The car is controlled by joystick but tops out at around 25 mph....

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20 June 2006

"Men must attend IEP meetings"

"Men must attend IEP meetings."

This advice comes from Charles Fox at the Special Education Law Blog in a Father's Day post discussing the role of fathers in the advocacy process. A short excerpt:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that "men must attend meetings." [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.

What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.
His list of 16 basic principles of advocacy is well worth reading, printing out, and keeping in IEP file to help you prepare each time you must go through the process.

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18 June 2006

Developmental issues and the assembly line mentality of modern education

Every day, it seems, I come across a new autism resource. (New in the sense that I haven't seen it, not necessarily 'new' new.) I recently found Hidden Recovery, "A parent's experience with High-Functioning Autism. Diagnosed at 2 with PDD-NOS, and recovered by kindergarten." I've not had a chance to read through the entire site yet, but have come across some interesting things. (I know that some will be put off by the use of the "R" word, but if you can get past that there is some good insight and lessons from past experience that all autism parents can make use of.)

One statement from the home page caught my eye (emphasis mine):

They are unaware of the fact that this is THE NEW GENERATION of typical peers – 33% of the kids on average in a classroom in America have some developmental issue. It is now typical to have all sorts of issues in these classrooms, identified or not.
Thirty three percent have development issues. What exactly does this mean? Is this a reflection on the human gene pool, are things just going to hell? I don't think so.

I need to do some more research on this, and anything readers can point me to would be highly appreciated: It seems to me that the problem isn't that the kids are developing any differently in general, but that our (by this I mean "society's") expectations for what kids should do, and be able to do, at certain milestones is changing.

For instance, to graduate high school kids are expected to have a certain level of knowledge. At least that's how it used to be. More recently, to graduate high school kids are required to successfully complete a certain number of required and elective courses. (This doesn't necessarily equate to knowledge of those subjects.) College entrance tests such as SAT or ACT kind of measure the knowledge, but are not required for high school graduation.

More recently still, the use of standardized testing has become more prevalent. I think I could go with a test for getting a high school diploma. The problem comes in when you start having these tests at more and more of the intermediate grades. As if every child actually develops along the same timeline!?! As it always seems to, it comes down to the bottom line - $$$$.

Education in the US today (in general) is treated as an assembly line: You've got the raw materials (students), the plant (schools), the assembly line workers and supervisors (teachers and administrators), and of course the managers (school board and other government). The line workers and supervisors are interested in producing the highest quality product they can while managers expect maximum productivity at maximum efficiency. The only way to prove you are doing this is to have metrics at the end of a production period that you can look at and use to adjust for the next production period, and the shorter the production period the more quickly you can adjust for problems.

Obviously - at least to me - this isn't a reasonable way to approach the education of the world's future, autistic or not.

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13 June 2006

Autism and the DSM (part 2)

I concluded my last post with this question:

If I think that autism should be in the DSM, am I not admitting that there is something ‘wrong’ with my child?
The answer is, as so many people have helped me figure out, a resounding NO.

Though autism is, as several folks have pointed out, a neurological condition as opposed to a mental illness, inclusion of autism in the DSM has provided a means of making the public aware of autism. It has also served as the basis for parents to get needed services and accomodation from local school districts and communities.
("Wait a minute," I hear some saying. "If there is nothing wrong with your autistic child, why does he need 'services and accomodation.'"

The short answer is that it is 'society' that needs to be 'cured.' Cured of its misconceptions and stereotypes. Cured of its very short-sighted, narrow-minded approach to what it 'normal' and 'good.' When that happens, I won't have to fight for the things my child should already be getting. (OK, that wasn't so short.) And while this is true of society in general, it is especially manifested in how education is approached here in the US. But that is a whole 'nother rant that I'll defer until later.)
Unfortunately, because the DSM is a manual that describes disorders - bad things - it has also served to encourage and reinforce the notion among the un-informed public that autism is bad and that autistics need to be fixed.

It also gives professionals justification to 'kill' autistics in the hope that they can be replaced with a normal person, as related by ballastexistenz, an adult autistic:
In 1996, I was living in an institution in which a doctor explicitly told me that he wanted to kill the person I was and replace me with someone else, and that he was going to, psychologically, do exactly that to me.
For now, we need to keep autism in the DSM, because it serves as the way for autism parents to help their children get the services they need to succeed in the world. Every parent of an autistic child who is working with (or, unfortunately, against) their local community to raise awareness is part of the "grass-roots" effort to raise awareness of what autism is and isn't and what our children are capable of achieving.

At the same time, we need to continue to advocate at the highest levels, to lay the groundwork necessary for the grass-roots work to take hold. As more and more individuals become familiar and aware, it will be easier to implement change from the top down.

Eventually, word will get out that there is nothing 'wrong' with our kids and we won't need to have autism in the DSM. I hope this day comes sooner rather than later.

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08 June 2006

Autism and the DSM (part 1)

In my post Who decides what’s autistic, anyway? I posed the question of how, if at all, the diagnostic criteria for autism should be modified in the next edition of the Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM. This made the implicit assumption that autism should be defined in the DSM at all. But is that a valid assumption?

Every now and then, like in MOM-NOS’ post that inspired my post on prevention and cure or some comments to that post, homosexuality is used as an analogy to autism as a way to discuss how people and society’s views can change toward those who are different from the cultural norm. In fact, homosexuality was included in the first two editions of the DSM and was only removed in 1973.

One of the basic arguments that anti-cure autism advocates have made – me included – goes along the lines of, “There is nothing to cure, that’s just the way they are.” Is that the same as saying, “Autism is not a disorder, it is just a different way of ‘being’, like being shy, an extroverted socialite, or (sticking to the analogy) gay?” And if so, is that the same as saying, “Autism shouldn’t be in the DSM.”

Should autism – or Pervasive Development Disorders in general – be included in the DSM?

Before we answer, it is important that we consider the role an autism diagnosis plays in the life of an autistic child. A diagnosis of autism is the basis for much, if not all, of the educational and other services that autistic children receive from the government and education system. (At least that is the case in the US.) If autism is not a disorder described in the DSM, and therefore not recognized as requiring special accomodations such as an IEP, what does this mean?

Granted, even without a diagnosis it would be obvious that our autistic kids are different and will still require and receive some special services; NT kids are identified by local school personnel all the time for speech related issues early in elementary school and given the appropriate speech therapy, all without the formal process of IEPs. But most autistic kids need a bit more support and services than a local school is able (or willing) to accommodate on their own.

If we argue that our autistic kids don’t need to be “cured,” how can we justify that our autistic kids should receive special treatment and services above and beyond what the other kids who also don’t need to be cured of anything receive. [My personal response to that is that every child should have an IEP, but I know that is not going to happen for many ($$$$) reasons.] Especially when you consider that in many places it is difficult enough getting the needed services when there is a diagnosis.

So, should autism stay in the DSM? I say, “Yes.” But this, in turn, raises some more questions:

If I think that autism should be in the DSM, am I not admitting that there is something ‘wrong’ with my child?

And if I’m saying that, how can argue against a cure?
To be continued….

tagged as: Autism, Asperger's Syndrome, IEP, Parenting, DSM

06 June 2006

A parent's thoughts on cure and prevention of autism

In any discussion about autism, especially with parents of newly diagnosed children or friends/family who have no direct experience with autism, the subjects of cure and prevention will inevitably come up. "Can you fix him?" "What went wrong?" "I'm trying to get pregnant, is there anything I can do to make sure my kid isn't autistic?"

The answers to these questions depend quite a bit on whom you ask, and also when you ask them. In one of my early posts to this blog, I wrote the following:

"We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?"

Pose this question to a group of parents of children just diagnosed with autism, and chances are you would get a very quick, passionate, and nearly unanimous response of YES!!! Ask this question to those parents of older children, though, and the responses would likely be more hesitant, not quite as passionate, and definitely not unanimous.
In (R)evolutionary parenting, MOM-NOS describes how her feelings have changed toward her son's autism over time:
When Bud was initially diagnosed, I viewed autism as "other" - an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.

Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part.

But as I came to understand Bud better, I learned that his autism is not...one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy.
The other key thing we must consider as our kids grow older is that they will develop opinions of their own about their 'condition' in life. If you were to present me today with the cure question I asked above, I would be unable to answer. Not because I'm undecided about what I would do, but because I think at this point (15 years old) it is no longer my decision alone to make. Sure, as a parent I would expect to have some input, and would do my best to make sure my son understood the implications of both options.

If you had asked me the question 13 years ago, I would have had to decide. Not knowing then what I know now, I have no doubt that I would have quickly and unreservedly said, "Yes." But if I had known then what I know now, what would my answer have been?

pregnant pause

In many ways, asking the cure question at the initial diagnosis (assuming it was early enough) is the same as 'preventing' autism in the child; if the autism is removed before it has a chance to "infuse every part of him and it shapes who he is in this world," then the autism will have been prevented from being a defining part of the child. Is prevention a 'bad' thing? Again, it depends on whom you ask.

If you are talking about pre-natal testing, the discussion will range from "with this test you can determine if your child will be autistic or not and decide whether or not you want to have him" to "this is the first step to eugenics and wiping out of autistics." I'm choosing not to engage in this discussion in this post, though I'm sure it will come up in the comments and in later posts.

If, however, you are talking about prevention through a "shot" like I mentioned above (I know, I know, this is not the way it would probably work - please bear with me), how would you answer the question. What factors would you consider?

I can't help but go back to the questions in my mind that prompted me to write To hear or not to hear. What do I want life for my son to be like? What options do I want him to have? What will he think of my decision when he gets old enough to understand what I have done?

If I had a child who was born deaf and was told by the doctors that through surgery my child would be able to hear, but the longer I waited the harder it would be for my child to transition from a non-hearing world to a hearing world, I must admit that I wouldn't hesitate any longer than it took me to figure out how to pay for it. Why should I think any differently about autism?

By saying I would prevent autism at an early age if I could, I'm not saying that I don't value my child as he is now. I can't imagine these past 15 years without him, and it is safe to say that my career path, my wife's career path, and my other son's life would be completely different had we not lived in Autismland all this time. But at the same time, I have no doubt that life without autism would have been just as enjoyable and rewarding, yet filled with the more 'typical' challenges that parents of teenage boys experience.

Parenting is hard, mainly because it is a long-term investment of time and effort (and money, of course) with a high degree of uncertainty about the final outcome. The things I do today will have impacts years from now that I could never imagine. I see one of main roles as a parent as the one who sets the path along which my children will begin their journey in life. Along with that, it is my job to help them understand the path they are on, the future paths that lie before them, and an understanding of how to navigate the world.

Or, as MOM-NOS says in (R)evolutionary parenting:
I will try to help him build the foundations that will serve him best [as an autistic person in a largely neurotypical world] - foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he's learned.

Or not use them.

My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.
Parenting is hard, and every parent approaches the challenge in different ways. I don't like the way some people parent their children, and I am in awe at how others make it look so easy. This applies to both "typical" parents and autism parents. But it is not my place, nor anyone else's I believe, to tell another parent how to raise their children. (And no, I don't believe anyone else should tell me how to be a parent either.)

In the end, parents answer only to themselves (obvious legal/moral exceptions aside) and, when they get older, their children. I'll leave it to them to judge.

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05 June 2006

After all, autistic kids are still just kids

If there is any theme to my beliefs and thoughts about raising an autistic child, it is this: Raising an autistic child is just like raising any other child, only different. As the parent of two teen-age boys, one autistic and one not, I know the challenges and joys of raising both.

In the Columbus Dispatch article Autistic kids fall victim to parents who run amok, columnist Deborah Kendrick addresses this very theme (emphasis added):

Anyone who has been a parent has at least one terrible moment where caring for a child seemed unbearable…. None of my children is autistic. They did, however, have special needs, because all children have special needs.

One mom in Autism Every Day states pathetically that her child will never marry. "How do you know that?" is what my heart is screaming at her….

I’ve heard parents of deaf kids, blind kids, kids with Down syndrome and other disabilities make the same kinds of pronouncements: My child will never (fill in the blank). To all of them I say no human can predict what another human will accomplish.
tagged as: Autism, Asperger's Syndrome, Parenting

04 June 2006

Questions about a cure's effect on people

When I checked my referer logs on Friday, I saw that quite a few people found their way to this blog looking for discussion about how the new movie X-Men III: The Last Stand might relate to autism. Most people found me through various search terms, but my post More thoughts on autism inspired by the X-Men trilogy was also linked to from “X-Men” and Disability Rights at specialchildren.about.com. (That article also points to A ‘Last Stand’ against cure, a bit more academic take on the issue).

I finally saw the movie yesterday, and as an X-Men fan I wasn’t disappointed. I don’t want to get into any specifics from the movie yet; I’d hate to spoil anything for people who are planning to see it. But I did come away from it with a few questions about autism cures that I hadn’t really thought of before. (These questions all assume that a cure exists.)

  • How many autistics would take the cure? (Though most writing by autistics that I’ve come across seems to be anti-cure, I can’t imagine that there are not pro-cure autistics out there.)
  • How would autistics who choose to be cured be viewed/treated by autistics who choose not to be cured?
  • How would a pro-cure parent of an autistic child feel about their child who chose not to be cured?
  • How would an anti-cure parent of an autistic child feel about their child who chose to be cured?
  • How do autistics feel about their pro- / anti- cure parents?
Unlike autism, which typically presents very early in life, in the world of the X-Men the “change” from human to mutant occurs at puberty, after the child has had a chance to experience what a “normal” life is. Subsequently, these mutants have an experiential basis for making a personal decision to be ‘cured’ or not that it seems to me autistics don’t have. Just a thought.

tagged as: Autism, Asperger's Syndrome, X-Men

02 June 2006

So what? [Redux]

In my post So what?, I referred to the autism mothers shown in the video Autism Every Day as selfish and whiny. To any autism parents who took my comments as personal insults, please allow me to apologize. Believe me, I know that there are times when you can’t help complain, because there is often a lot to complain about. The many autism parents I’ve met online through this blog and other forums are doing their best to get through the hard times and enjoy the good. It was not my intent to trivialize or dismiss what we as autism parents experience, yes every day.

What really irritated me about the video was the depiction of these autism mothers as selfish and whiny. But I guess I shouldn’t be too surprised at the content and message of the video, considering the source – Autism Speaks. The following is excerpted from the Founder’s Message (emphasis added):

  • In 2004, our grandson was diagnosed with autism. Helpless, we watched him slip away into the cruel embrace of this disorder…. We launched Autism Speaks in February 2005 to help find a cure for autism by raising the funds that will facilitate and quicken the pace of research, to raise public awareness of autism, and to give hope to all those who suffer from this disorder.
  • Few disorders are as devastating to a child and his or her family. Instead of Little League games and sleepovers, most people with autism will face lifelong supervision and care, exhausting a family's financial and emotional resources.
  • The pace is quickening, and, God willing, we won't stop until we have conquered autism—one child, one voice at a time.
And their mission:
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Though I don’t necessarily believe in the possibility (or need) for a cure of autism, I don’t begrudge those who seek a cure. But the mission stated above, all of the work being done and money being spent by Autism Speaks and similar organizations, seems to leave out a very important piece of life with autism – namely, living with autism. The mission, as stated, is basically saying, “We’ll have this problem figured out soon, in the mean time just hang tight.”

The strange thing, though, is that the Autism Speaks site is filled with information such as "How to cope" and "How to grow." Why didn't this show up in the video?

As with many of my posts, I started on one thread, ended up on another (with yet another thread - cure and prevention - lurking just below the surface), and found myself not really knowing what my point is (if, indeed, there is one). I think I am still suffering from Ack! and Thbbbt!, trying to get all of this information sorted and figured out. Though intellectually I know that is not really possible, I still hold out hope.

tagged as: Autism, Asperger's Syndrome, Autism Speaks