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Press Contacts: Ari Ne’eman

The Autistic Self-Advocacy Network

Phone: 732.763.5530

E-mail: aneeman@autisticadvocacy.org

FOR IMMEDIATE RELEASE

Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

“We are the true voices of Autism,” say Autistic adults; Campaign spreads
stigma, prejudice and inaccurate information; ASAN vows protest of upcoming
Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) – The autism community reacted in
horror today to Autism Speaks’ new “I am Autism” campaign, presenting
Autistic people as kidnap victims and burdens on their family members and
communities.

“I am autism. I have no interest in right or wrong. I will plot to rob you
of your children and your dreams….And if you’re happily married, I will make
sure that your marriage fails. Your money will fall into my hands, and I
will bankrupt you for my own self-gain,” says the “I am Autism” video,
released yesterday and created by Academy Award-nominated director
Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.


“This is the latest in a series of unethical fundraising strategies adopted
by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and
President of the Autistic Self Advocacy Network (ASAN), “This type of fear
mongering hurts Autistic people, by raising fear and not contributing in the
slightest to accurate understanding of the needs of Autistic adults and
children.” ASAN’s Columbus, Ohio chapter has already made arrangements to
protest Autism Speaks’ upcoming local fundraising walk and other ASAN
chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism
Speaks video repeats frequently referenced claims of higher than average
divorce rates amongst parents of Autistic children. However, a 2008 study
conducted by HarrisInteractive for Easter Seals in cooperation with the
Autism Society of America found divorce rates for parents of Autistic
children lower than those for families with no children with disabilities.
The video also relies heavily on the idea of rapidly increasing autism
rates. Another new study, released the same day as the video, by the British
Government’s National Health Service found that autism rates among adults
are the same as amongst children, indicating that the popular “epidemic”
claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a
parent of an Autistic child living in Los Angeles, California. “Whatever the
challenges that autism may bring, my son deserves better than being
presented as a burden on society. Autism Speaks’ misrepresentation makes

my life and the life of my child more difficult.”


“Autism Speaks seems to think that parents’ embarrassment at their kids’
meltdowns is more important than autistic kids’ pain,” writes Sarah, an
Autistic blogger at the blog *Cat in a Dog’s
World<http://autisticcats.blogspot.com/>

“Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 NYU Child Study Center
“Ransom Notes” campaign, which consisted of faux ransom notes claiming to

be from an anthropomorphized disability which had kidnapped a child. Those ads
were withdrawn after two and a half weeks, due to widespread outcry from
self-advocates, parents and professionals and the condemnation of twenty-two
national disability rights organizations, led by the Autistic Self Advocacy
Network. The Ransom Notes controversy was reported on by The Wall Street
Journal, The New York Times, Good Morning America, The Washington Post
and other major media outlets. ASAN announced plans to work with the
cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to
the presentation of their family members as something sinister and criminal,
clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult
on the autism spectrum in Virginia, who serves on the board of the Autistic
Self Advocacy Network. “Our community is furious about Autism Speaks’
continued exploitation and will be taking action.”

Selected initial responses to Autism Speaks’ “I am Autism” campaign from
bloggers in the Autism community follow:

Club 166 (Parent):

http://club166.blogspot.com/2009/09/when-will-they-listen.html

“The above video takes up where the Ransom Campaign ended, and goes on from
there. Not content just to dehumanize autistic individuals, the Autism
Speaks video goes on to paint a picture of horror using the most vivid
imagery it can find-your marriage will fail, you will go broke, you will
never be able to function in society at all, etc…

Two years ago the NYU Child Study Center claimed ignorance of the way that
autistic (and other disabled individuals) felt. The response at that time
was heard throughout the country, even in major national media. I wonder
what excuse Autism Speaks can possibly come up with this time.”

Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks/

“I am Autism Speaks

I will steal your voice and make sure you can never speak for yourself.

I will steal your parents’ money and spend it on a residence on Park Avenue.

I will use demeaning language to degrade, pity and marginalize you.

I have declared war on you.”

Emily (Parent):

http://daisymayfattypants.blogspot.com/2009/09/what-if-someone-did-this-with-say-downs.html

“This is horrific. I cannot believe that these people thought it was OK to
demonize a developmental disorder in this way, behaving as though autism
were something separate from the people who have it, like a wart or a blight
or a boil that should be burned off or lanced and drained before it infects
someone else or destroys your marriage, rather than what it really is, a
differential neural construct that is just as much a part of the people who
have it as their eye color. Is there any other developmental difference or
genetic disorder that could be vilified in this way with an assumption of
impunity? Dyslexia? Schizophrenia? Tourette’s? Depression? Chromosomal
disorders? Doubt it.”

Sarah (Self-advocate):

http://autisticcats.blogspot.com/2009/09/i-am-autism-embarrassment-trope.html

“Autism Speaks seems to think that parents’ embarrassment at their kids’
meltdowns is more important than autistic kids’ pain. They’re wrong in that,
and they’re also wrong to suggest that donating money to Autism Speaks and
trying to find a “cure” is the only way to solve this problem. Because while
Autism Speaks-funded scientists play with genes in their laboratories, real
autistic people are living our lives and will continue to suffer serious
anxiety in many public places. Instead of writing another check to Autism
Speaks, I suggest actually trying to figure out why an individual autistic
person may be experiencing these difficulties. And taking steps on both a
personal and societal level to ensure that public places are more
accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”


Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

————————————————
Take a look at our innovative new Public Service Announcement produced with
the Dan Marino Foundation at http://www.nomyths.org

If you like what we do, help support the Autistic Self Advocacy Network by
making a donation at:
https://www.change.org/donation/create?charity_id=211198

 

Bruce Springsteen

 “Tell Bruce Springsteen Why Autism Speaks Doesn’t Speak For Us and Help Fight Autism Speaks!”

Hello,

As many of you are aware, Autism Speaks sunk to a new low yesterday – even
for them! The “I am Autism” campaign repeats the same tired old lies as the
NYU Child Study Center’s Ransom Notes ads, which our community successfully
stopped in 2007, and goes even further, presenting Autistic people as
useless burdens on society, on our families and on the world at large. ” “I
am autism. I have no interest in right or wrong. I will plot to rob you of
your children and your dreams….And if you’re happily married, I will make
sure that your marriage fails. Your money will fall into my hands, and I
will bankrupt you for my own self-gain,” says the video campaign. Full text
is available here<http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=58>.
As we did in response to the “Ransom Notes” ads, we are preparing a joint
letter from the disability community in response to these horrific
statements, which we hope to have available early next week. If you are
connected to an organization that might be interested in signing on to such
a letter, please e-mail info@autisticadvocacy.org immediately.

In addition, we are encouraging people to act immediately by joining ASAN in
writing singer Bruce Springsteen, scheduled to participate in an Autism
Speaks fundraiser in November, to end his newfound association with
this organization
that devalues our lives and speaks about us without us. You can contact
Springsteen’s publicist at mlaverty@shorefire.com  <mlaverty@shorefire.com>or
by phone at 718-552-7171.

Finally, as we mentioned in our initial press
release<http://asansouthwestohio.blogspot.com/2009/09/autistic-community-condemns-autism.html>this
morning, ASAN Activists and allies are preparing to confront Autism
Speaks fundraising in their own communities. If you would be willing to
organize a protest in your community, whether you are a self advocate,
family member or other ally, please e-mail us at info@autisticadvocacy.org.
There has never been a more important time for our community to assert our
voice.

Thank you and, as always, Nothing About Us, Without Us!

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

Groups Outraged Over Video Released By Autism Speaks

By Michelle Diament

SEPTEMBER
25, 2009

A group of leading disability organizations is calling on Autism Speaks’
benefactors to end their support for the organization. The move comes in
response to a video distributed by Autism Speaks which critics say depicts
people with autism as less than human and burdens on society.

The video, which aired at Autism Speaks’ World Focus on Autism event earlier
this week in New York, features two parts.

The first part shows young people with autism as a voice-over declares, “I
am autism.” The man’s voice continues by describing autism as a disorder
that works “faster than pediatric AIDS, cancer and diabetes combined,” will
ensure that your marriage fails, will bankrupt you, cause you not to sleep
and make it “virtually impossible” to go out in public without experiencing
embarrassment or pain.

The second portion of the video features more hopeful images. The
voice-overs declare that through love for their children, parents and others
will work tirelessly to overcome the challenges autism presents.

In response, disability advocates are now coming together to condemn the
video, which they say is part of a pattern of behavior by the nation’s
largest autism advocacy organization.

In a letter being prepared for open circulation next week, the group of
advocates say the video is a “fundraising tool” that relies on “fear,
stigma, misinformation and prejudice against autistic people.” The letter
will be sent to Autism Speaks donors, sponsors and supporters and it will be
posted publicly, organizers say.

Already the American Association of People with Disabilities, ADAPT and TASH
are among the organizations that have signed on to the letter organized by
the Autistic Self-Advocacy Network. Other organizations are now reviewing
the document.

The letter cites a public service announcement and another film from 2005
called “Autism Everyday” as other examples of fear-based tactics used by
Autism Speaks.

The group of advocates go on to ask the public to no longer support Autism
Speaks and instead find new ways to support people with autism and other
disabilities.

“Autism Speaks believes that its bottom line will be helped by portraying
autistic people as less than human,” says Ari Ne’eman, president of the
Autistic Self-Advocacy Network. “This is really damaging if you’re trying to
get your child included in school or if you’re an autistic person trying to
find a job or get included in society more broadly.”

When asked about the video, Autism Speaks representatives tried to distance
the organization from the short film, which appears on the group’s Web site
and includes home videos solicited through the organization.

Representatives said the film was created by Academy Award-nominated
director Alfonso Cuarón and Grammy-nominated songwriter and producer Billy
Mann, both of whom have children with autism. The film is set to a poem
written by Mann.

“It is an intensely personal expression by these two fathers and their hope
is that the piece inspires other voices and artists in the autism
community,” according to a statement from Autism Speaks. “No one perspective
can ever be the definitive voice of autism. We encourage everyone in the
autism community to acknowledge the myriad voices and have tolerance for the
spectrum of opinions.”

 http://www.disabilityscoop.com/2009/09/25/autism-speaks-video/5541/

 Autism Speaks Still Claims They Are Autism … Let’s Prove Them Wrong

Hello,

Last week, Autism Speaks continued their pattern of exploitation of Autistic
people and our families by releasing the video “I am
Autism”<http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=58>,
in which Autistic people are portrayed as stolen children and burdens on our
families and on society. Contrary to some claims, Autism Speaks continues to
promote the video on its website
<http://www.autismspeaks.org/press/united_nations_world_focus_on_autism_2009.php>and
through youtube. <http://www.youtube.com/watch?v=HDdcDlQVYtM> In addition,
this is just a small part of a long history of problems with Autism Speaks.

*Autism Speaks uses unethical fundraising tactics relying on fear and
devaluing the lives of Autistic people: *Autism Speaks’ unethical
fundraising tactics are not limited to the new “I am Autism” video. Its
television Public Service Announcements compare having a child on the autism
spectrum to having a child caught in a fatal car accident or struck by
lightning. Autism as a fate worse than death is a consistent theme in Autism
Speaks’ fundraising.

*Very little money donated to Autism Speaks goes toward helping Autistic
people and families: *According to their 2008 annual report, only 4% of
Autism Speaks’ budget goes towards the “Family Service” grants that are the
organization’s means of funding services. Given the huge sums of money
Autism Speaks raises from local communities as compared to the miniscule
sums returned to services, supports or educational initiatives that have a
practical impact on the lives of Autistic people and our family members,
Autism Speaks is a tremendous drain on the ability of communities to fund
autism service-provision and education initiatives. Furthermore, while the
bulk of Autism Speaks’ budget goes towards research (65%), only a small
minority of Autism Speaks’ research budget goes towards research oriented
around improving services, supports, treatments and educational
methodologies available to Autistic adults and children.

*Autism Speaks excludes the people it pretends to represent: *Autism Speaks
is one of an increasingly few number of major disability advocacy
organizations that refuse to include any individual with the disability they
purport to serve on their board of directors or at any point in their
leadership and decision-making processes. In large part due to Autism Speaks
public relations strategy of presenting Autistic people as silent burdens on
society rather than human beings with thoughts, feelings and opinions of our
own, Autism Speaks’ governance policies are deeply unrepresentative and out
of step with the mainstream of the non-profit and disability communities.

*Autism Speaks funds eugenics: *A major portion of Autism Speaks research
agenda is oriented around genetic research with eugenic implications. One of
Autism Speaks major priorities is the identification of genetic biomarkers
for the autism spectrum, thus allowing the prenatal identification and
potential selective abortion of Autistic fetuses prior to birth. We are not
opposed to genetic research and we take no position on the broader abortion
issue, but we are deeply concerned about the potential for eugenics in
Autism Speaks’ research. The refusal of the organization to consider the
ethical, moral and social implications of what it funds is deeply
concerning, particularly given the 92% rate of selective abortion for the
developmental disability Down Syndrome. Rather than fund research and
services that can help to improve the quality of life of Autistic adults and
children, Autism Speaks funding is primarily directed towards preventing our
very existences.

For these reasons and others, we assert that Autism Speaks does not speak
for us. ASAN is organizing protests all over the country, with a successful
<http://www.youtube.com/watch?v=JxIPqE3DYG4&feature=related>one
<http://www.youtube.com/watch?v=jYeZVQu5H3A>in
<http://www.newscientist.com/article/dn17878-poetic-autism-film-divides-campaigners.html>Portland,
Oregon having already occurred. If you’d like to participate in the protest,
e-mail us at info@autisticadvocacy.org. Together, we can take action against
an exploitative organization and reclaim our voice.

Thank you and, as always, Nothing About Us Without Us!

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

Letter In Response to Autism Speaks’ Exploitative Practices

The Autistic Self Advocacy Network and other organizations representing the
Cross-Disability Community are distributing this joint letter to the
sponsors, donors and supporters of Autism Speaks following the
organization’s latest offensive and damaging Public Service Announcement, “I
am Autism” <http://www.youtube.com/watch?v=HDdcDlQVYtM>. If you are an
organization that would like to sign on to the letter, please e-mail ASAN at
info@autisticadvocacy.org before Close of Business Tuesday, October 6th,
2009. If you are an individual who would like to join ASAN’s upcoming
protests of Autism Speaks in Ohio, New England, New York City and elsewhere
across the country please e-mail ASAN at info@autisticadvocacy.org Thank you
for your support and please feel free to distribute for additional
signatories.*

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents,
professionals and allies in the Autism, Autistic and Disability Communities,
are writing to you to express our concern about the recent actions of Autism
Speaks. Our work is about helping empower and support people with
disabilities of all kinds, including adults and youth on the autism
spectrum, and we recognize that there are a wide variety of means towards
accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear,
stigma, misinformation and prejudice against Autistic people as a
fundraising tool does real damage to people with disabilities everywhere.
The most recent example of this lack of ethics can be found in Autism
Speaks’ new “I am Autism” campaign which states, *“I am autism…I know
where you live…I work faster than pediatric AIDS, cancer and diabetes
combined. And if you’re happily married, I will make sure that your marriage
fails. Your money will fall into my hands and I will bankrupt you for my own
self-gain…I will make it virtually impossible for your family to easily
attend a temple, birthday party, or public park without a struggle, without
embarrassment, without pain…I am autism. I have no interest in right or
wrong. I derive great pleasure out of your loneliness.”*

Not only does this campaign rely on offensive stereotypes and inaccurate
information (research indicates that parents of Autistic children are not
more likely to divorce than parents of non-Autistic children), but it also
does real damage to the cause of disability rights. By choosing to portray
Autistic people as husks of real people, stolen out of our own bodies,
Autism Speaks reinforces stereotypes and prejudice against people with
disabilities that have existed for centuries and have been the source of
pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new
ways to show your support for Autistic people and others with disabilities.
As the result of a pattern of unethical behavior and irresponsible
governance, outlined below, we believe that Autism Speaks as an organization
no longer deserves your time, energy, money and support.

*Autism Speaks uses damaging and offensive fundraising tactics which rely on
fear, stereotypes and devaluing the lives of people on the autism spectrum:
*Autism Speaks’ unethical fundraising tactics are not limited to the new “I
am Autism” video. Its television Public Service Announcements compare having
a child on the autism spectrum to having a child caught in a fatal car
accident or struck by lightning. In fact, the idea of autism as a fate worse
than death is a frequent theme in their fundraising and awareness efforts,
going back to their “Autism Every Day” film in 2005. Indeed, throughout
Autism Speaks’ fundraising is a consistent and unfortunate theme of fear,
pity and prejudice, presenting Autistic adults and children not as full
human beings but as burdens on society that must be eliminated as soon as
possible.

*Very little money donated to Autism Speaks goes toward helping Autistic
people and families: *According to their 2008 annual report, only 4% of
Autism Speaks’ budget goes towards the “Family Service” grants that are the
organization’s means of funding services. Given the huge sums of money
Autism Speaks raises from local communities as compared to the miniscule
sums it gives back, it is not an exaggeration to say that Autism Speaks is a
tremendous drain on the ability of communities to fund autism
service-provision and education initiatives Furthermore, while the bulk of
Autism Speaks’ budget (65%) goes toward genetic and biomedical research,
only a small minority of Autism Speaks’ research budget goes towards
research oriented around improving services, supports, treatments and
educational methodologies, with most funding going towards basic research
oriented around causation and genetic research, including the prospect of
prenatal testing. Although Autism Speaks has not prioritized services with a
practical impact for families and individuals in its budget, its rates of
executive pay are the highest in the autism world, with annual salaries as
high as $600,000 a year.

*Autism Speaks excludes the people it pretends to represent: *Autism Speaks
is one of an increasingly few number of major disability advocacy
organizations that refuse to include any individual with the disability they
purport to serve on their board of directors or at any point in their
leadership and decision-making processes. In large part due to Autism
Speaks’ public relations strategy of presenting Autistic people as silent
burdens on society rather than human beings with thoughts, feelings and
opinions, Autism Speaks’ governance policies are deeply unrepresentative and
out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and
Cancer, autism is not a terminal disease. It is a disability, one that comes
with significant challenges in a wide variety of realms. Yet the answer to
those challenges is not to create a world in which people are afraid of
people on the autism spectrum. The answer is not to create a world in which
the word autism is met with terror, hatred and prejudice. It is to work to
create a society that recognizes the civil rights of Autistic people and
others with disabilities. It is to work to create a world in which people
with disabilities can benefit from the supports, the services and the
educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other
disabilities ourselves, and our allies, family members, friends and
supporters. Autism Speaks does not speak for us. We are not stolen – we are
right here. Our lives may be difficult – but they are worth living. Autism
Speaks Does Not Speak For Us and we will not work with an organization that
relies on damaging and offensive stereotypes to advance an agenda out of
step with those they purport to represent. We call upon you to recognize
this and find better avenues for your admirable desire to support Autistic
people and our families. We call upon you to end your support for Autism
Speaks.

Regards,

*National:*

The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)

Not Dead Yet
The Bazelon Center for Mental Health Law

Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2
*International:*
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

*Local and Regional:*
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in
Connecticut
Tangram in Indianapolis, Indiana


Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

————————————————
Take a look at our innovative new Public Service Announcement produced with
the Dan Marino Foundation at http://www.nomyths.org

If you like what we do, help support the Autistic Self Advocacy Network by
making a donation at:
https://www.change.org/donation/create?charity_id=211198


Autism Speaks Pulls Video As Critics Turn Up Heat

By Michelle Diament

October 2, 2009

Under pressure, Autism Speaks removed a
controversial video from its Web site Thursday
and privately apologized to a number of
disability organizations. Despite this, critics
are pressing forward with a public letter
condemning the nation’s largest autism advocacy organization.
 

The
<http://www.disabili tyscoop.com/ 2009/09/25/ autism-speaks- video/5541/>controversy
surrounds a
<http://www.disabili tyscoop.com/ 2009/09/25/ autism-speaks- video/5541/>video
called “I am autism,” which was released in
September at Autism Speaks’ World Focus on Autism event.

The video includes an eerie voice-over declaring
that autism will ensure that your marriage fails,
bankrupt you and make it “virtually impossible”
to go out in public without experiencing
embarrassment or pain. In contrast, a second,
more hopeful portion of the video says parents
and others will work tirelessly to overcome the challenges autism presents.

Many self-advocates found the video offensive.
Autism Speaks said the video was merely an
expression of two fathers who produced the film,
both of whom have children with autism.

Under continuing pressure, however, the group
removed the video from its Web site Thursday and
privately apologized to leaders of other
disability organizations critical of the film.
Still, the video remains on Autism Speaks’ YouTube channel.

“Autism Speaks staff has made every effort to
reach out to those who have expressed their
disapproval in order to discuss their concerns
and criticisms,” according to the organization’ s spokesman Adam Pockriss.

Nonetheless, critics are proceeding with their
campaign against Autism Speaks, publicly
releasing a letter Thursday asking the group’s
sponsors, donors and supporters to find new ways
to support people with disabilities.

The letter charges that the video uses, “fear,
stigma, misinformation and prejudice against
Autistic people as a fundraising tool” and says
doing so “does real damage to people with disabilities everywhere.”

More than two dozen disability organizations
including the National Council on Independent
Living, the Bazelon Center for Mental Health Law
and the Autistic Self-Advocacy Network have already signed the letter.

Copyright © 2009 Disability Scoop, LLC. All
Rights Reserved. For reprints and permissions
click <http://www.disabili tyscoop.com/ reprints- and-permissions>here.



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