Parish coach excludes third grader with autism from cheerleading squad...

...but the good news is the little girl is still cheering despite the events swirling around her. Last weekend she earned her way onto an all star community cheerleading squad.

The mother of third grader Joanna Petosa says her daughter loves cheerleading and can do the cheers with precision. Nevertheless, she says that St. Christopher's cheerleading coach told her that her daughter is being removed from the squad because she would drag down the other kids.

Sally Petosa says the issue is her daughter's autism. According to her, last year the parents of the team members said they were concerned about Joanna keeping up, so Sally permitted her daughter to be placed on a younger squad and was told this year her daughter would rejoin the group of her own age. Sally gave them a $60 deposit, but was told by the coach that Joanna, who is an A student, could not be on the team this year because "they had come to the conclusion that she didn't have the mental capacity to do the stunts."

A spokesperson for the Archdiocese of New York denies that "the coach called out Joanna's diagnosis". Her explanation is that Joanna didn't make it onto a new competitive team, but could cheer at basketball games with five other girls who also didn't make the team.

However, Sally Petosa says that last weekend Joanna tried out for an all stars cheerleading team called Island Xplosion and made the squad. James DeFranco, the coach of Island Xplosion said that "[Joanna] got on the floor and stretched with the other girls and did all the tumbles, cartwheels and roundoffs. She even learned a whole routine and a jump sequence, while she was here. She did anything any other girl did. She was even quicker than some of them."

Parish officials are referring all questions to the Archdiocese. The director of Staten Island Catholic Charities says he "was angered that St. Christopher's wouldn't give Joanna a chance".

To read more, go here.

Darwinism is alive and well in our school system

Over at The Gimp Parade, Kay is writing about Alex, who was kicked out of his kindergarten class after the teacher had the class vote whether to keep him out. They all lost, 14-2. Worse yet, the class was asked to tell him how they felt about him, and words like "disgusting" were thrown around.

Alex is in the process of being diagnosed with Asperger's/autism and, according to some, the diagnosis has already been made. In any event, the teacher was present at IEP meetings and knew this history.

This is the third post I've tried to write about this event. Why? Because yesterday and today my own nephew is going through his own situation. No, he wasn't kicked out of a classroom. But he's unable to go on a class trip, because it involves things like rock climbing and apparently fording rivers and streams and things like that. I guess it's like a sixth grade Survivors thing or something.

Here's the kicker: there's no alternative to this trip. If you're not able to go, you are just out of luck. Not a big deal, perhaps, to adults. I guarantee you it's a bigdeal to him. Watching the bus pull out with everyone else on it? Hearing everyone talk about it? Excluded yet again, as he is day after day because of how we set up our educational system - still.

These "little things", these events that perhaps seem small and it's just too much of a bureaucratic hassle to fix, loom large in the lives of our children.

I still remember my sixth grade class trip. Gary spilled Pepsi on the bus and I spent all day with sticky socks walking around New York. Ew. And my best friend and I got to see artwork that we never would have seen at that age. I also had my first kiss. Yes, Gary. Ew.

My nephew could have gone on so many other kinds of trips. He would have gladly gone if this wasn't such an extreme trip, one set up that it can't possibly be made accessible. I question why physical prowess is still so important in our society because, conscious or unconscious, we differentiate on so many levels on that basis alone.

And then there's Alex. If you ask his mom, she'd say we still have pack behavior and pick on the weakest, most vulnerable and even teach our young to do the same. Even educators, who should know better.

Maybe we've all watched too many of the Survivor shows

Darwinism is alive and well in our school system.

To see what others are saying, click here.

What she said

I just finished reading an honest and heartfelt post by Elizabeth about some Christians who backed off after she told them she had a terminal diagnosis. She writes about how they avoided her. She writes about how they said they would pray for her and hope for a miracle..and then backed off from her and how hurtful that was. She writes:

I AM a Christian so I have nothing against prayer, it is just I never expected “I’ll pray for you” to be synonymous with, “I am about to sever all communication with you.” And indeed since then I have noticed that for some people, people with ample availability to do more “pray for you” actually came with a pride in their apparent helplessness ("sorry, dedicated to the XXXXX Ministry, I leave this in our loving Father's hands").

For those who don’t know the story of Jesus after “the last supper” Jesus went up to a garden taking with him three of his closest friends. Why? Because he knew he was to be in pain, and soon die and was scared. He went up and prayed, crying and so depressed that he wished to die and when done returned to find his friends….asleep. With a certain anger and desperation he said, “Can’t you even stay awake with me for one hour?” Now THAT, was Jesus’ prayer to his friends. A prayer saying “be with me, comfort me.”

I'm going to go read a book because I can't put it any better than she did.

A blogger asks: How do we build community?

The "reason" given for exclusion varies from place to place. Inclusion, it seems, is illusion, even in 2008 in America today.

Fear and loathing are probably the main motivations for excluding individuals. The idea that we may have to consider the feelings of someone different from self is startling to us. It immediately raises to our consciousness our own bias. Something we don't want to acknowledge, or be associated with. Do we prefer "Out of sight, out of mind?"

But a group, City, State or Country is handicapped when not all of its individuals are considered members of the community, much less respected members of the community. The issue then, and which we have been skirting for a long time, is "Who should be members of the community, and how do we respect this commitment?"

How do we build community. How do we value community? How do we open ourselves to the views of others, whom we have learned to ignore, scorn, and speak with contempt about?

Yes, indeed, this is the question. How do we build community?


Read the rest of this important post at from the port.

A NY Times piece features a story about seriously ill and disabled children and a doctor estimates that 70% of those he sees could wind up institutionalized in nursing homes after the age of eighteen based on the present resources and community care.

Institutionalizing those with disabilities, rather than having alternative community care as children and their parents who care for them age, takes them out of our community. This is one of the main reasons that community care, which is less expensive, is being sought on a wider scale by disability advocates and is supported by the USCCB.

Part of building community is accepting that, although our lives may look different to each other, the things that give us meaning and a sense of purpose are the same. Until we do that and embrace the diversity that occurs among human beings, an "out of sight, out of mind" exclusionary attitude will continue to be reflected in our social policies.

In this 2005 letter, the USCCB writes in support of legislation to help attain the goal of community living:


On behalf of the United States Conference of Catholic Bishops, the Catholic Health Association of the United States, and the National Catholic Partnership on Disability, we are writing to thank you and express our support for your legislation, the Medicaid Community-Based Attendant Services and Supports Act of 2005 (MiCASSA), S. 401/H.R. 910.

Our faith calls us to work for the full inclusion of all persons with disabilities in society and in the Church. This is rooted in the earthly ministry of Jesus, whose deep concern for the sick and for the men and women with disabilities he encountered is clear in the New Testament. Throughout history, the Church has followed Jesus’ example through its diverse healing ministry, seen today in the Catholic health care facilities, community health clinics and Catholic charities agencies that serve millions and millions of people in our country.

In recent decades, our Church has come to a greater understanding of the needs of our brothers and sisters with disabilities. In 1978, the bishops issued their Pastoral Statement on People with Disabilities. In that statement, the bishops called upon all people of good will to work with people with disabilities to improve their living conditions and ensure that each individual is able to achieve the fullest measure of personal development of which he or she is capable.

It is in that spirit that we are pleased to support MiCASSA. With the services that MiCASSA would make available, more people with disabilities will be able to move from institutional care to lives of independence in their communities. The legislation will give them the choices and control over their lives they deserve. It will also increase the ability of people with disabilities to fulfill the duty we all share, to contribute to the common good through work, service and participation in community life.




via USCCB site

To read more about MiCASSA, go here.

Keeping the gimps out of sight - or - get out of the pool

In the UK, swimmers drove injured Iraq vets from a swimming pool with jeers because they feared their appearance might scare children.

"The unpleasant scenes broke out at Leatherhead Leisure Centre in Surrey as the servicemen, from Headley Court Military Hospital, were starting a weekly swimming therapy session."

This happens for people with disabilities. It's not usually in the paper.

Often it's more subtle, as in the ever popular image of the parent yanking his/her child by his/her arm away from a disabled person.

I call it "keeping the gimps out of sight".

It's an interesting form of exclusion when it happens. Since disability is a part of life, I'm not sure what it accomplishes to deal with it this way rather than educate kids when they see it. We don't do that with other life experiences, do we? Imagine if parents handled everything like that - whisking children away instead of teaching them.

I understand that fear is behind it and we can analyze why people do it - but it's good to see in this article that people are questioning it. Mostly it's because these particular gimps gave up their limbs, etc. for their country.

"The incident has led to widespread condemnation. Admiral Lord Boyce, a former head of the Armed Forces, said the women should be "named and shamed".
He said: "These people are beneath contempt and everything should be done to get their names and publish them in the press.
"It is contemptible that people who have given their limbs for their country should be so abused when they are trying to get fit again."

It would be nice if the quotes read that it's not right to subscribe to keeping any gimp out of sight. Being treated as if I frighten small children has never been the highlight of any of my days. It certainly would be nice to see it read like this: "It is contemptible that people with disabilities should be so abused."

Sigh. Kids deal with things so much better when parents' fears don't interfere.

[visual description: Prince Charles greets other injured troops using wheelchairs.}

"Subtle" discrimination?

Recently a friend who has a disability called me, very upset. She told me that a group she belongs to had formed a subgroup - calling it a women's group -but hadn't invited her or a number of other people to join despite the fact that this subgroup was acting under the auspices of the main group that was an open organization.

Not realizing that it was intended to be exclusionary, my friend had found out where they met, trekked over there and went from room to room in the building to find their meeting. When she discovered that it was an exclusionary subgroup that she was not "supposed " to find, she was very hurt and stopped going to the main group.

Over the space of a few weeks, it came to light that two other women we know who are disabled also were not "invited" to join the woman's group. One called several women who were attending and asked for details. The woman didn't answer her. And, although the location became known at some point, when these women showed up it was changed.

Discrimination on the basis of disability? My guess is that a number of people, disabled and not, were excluded. It might be kind of humorous (if it wasn't such hurtful behavior) that they called it a women's group, acting as if they needed a separate group from the main for women's issues - and then turned around and discriminated against others.

Then there's the issue of scapegoating which is different than trying to distinguish discrimination from dislike based on dealing with a person. Scapegoating is a result of discrimination and prejudice but can look as if it's legitimate when a person from a minority is "picked on" for personal traits that would be tolerated when shown by someone else in the "in group" - but these same behaviors are not tolerated by someone in the "out group" and are used to justify exclusion. When an individual is scapegoated, she is blamed when the "fault lies elsewhere", according to the Anti Defamation League.

So what causes this kind of behavior on the basis of discrimination and prejudice? There is a distinct difference between thinking something that is discriminatory and acting in ways to promote those exclusionary beliefs. At this point someone might jump up, draw a chart and point at a continuum on it to pinpoint where it falls.

But I don't think that answers the question of what drives people to go out and create an exclusionary subgroup to an otherwise open organization. And what about the fact that the open organization colludes by not disbanding it when its purposes are "found out"? Does it seem too subtle a type of discrimination to people?

To my friend who hasn't returned to the main group, it wasn't subtle at all.

On distancing from the disabled

"When we see people who are disadvantaged in comparison to us, we distance ourselves, both to protect ourselves from empathetic feelings and also to avoid the guilt of not helping them." via changingminds.org on Empathy vs. Objectification

We see it in our social spaces, when special areas are set aside for the disabled. Our history as disabled people consists of being educated separately, institutionalized or hidden away and "housed" separately and excluded socially. Exclusion itself and the need to work toward inclusion is a result of the distancing that has taken place.

So what is this distancing about? Some say it's about an aversion, about the disabled looking different. But as our world grows smaller and media allows us all to educate ourselves about disability - hear about it, look at it, etc., these arguments begin to lose ground. Perhaps years ago, when people didn't get out much or travel or have online access, that would be a more viable argument. You were less likely to meet a number of disabled people, I suppose. But, again, this has changed a great deal.

Then there's the quote above which basically states that distancing can be about avoiding the guilt of not helping those we see as disadvantaged. Well, thanks to all the myths over the years (the poster child, the telethon melodrama), many do see the disabled as disadvantaged. You may even be wondering as I write this - aren't they? Isn't being around the disabled always about helping them, giving to them and then we all go home?

No and that's exactly where it's all a self fulfilling prophecy. When people limit their interaction and relationships to disabled people in those ways, they never learn that being disabled doesn't consist of being in these unidimensional roles.

The reality is that disabled people, depending on their disability, do things differently. I'm amazed at the range of reactions I received in email about the videos of the quad cooking a pizza. Some people were horrified and said he would burn himself alive while others said he was inspirational doing this daily task. I like Dirty butter's comment that a cooking mitt is a good idea next time. Certainly using a quad reacher to lift a hot pizza pan out of the oven has its dangerous moments (although not as dangerous perhaps as using one for other things, I can attest to that!) But it's an example of how a quad does things differently. The comments I really liked were the ones who 'got' that he found a way to make a pizza in the oven.

Seeing disability as a disadvantage does a disservice to all of us. It denigrates the creative, resourceful solutions that people find while living in a world that is not universallly designed. Such a view , unfortunately, grows things like shame, fear and despair in its garden rather than nurturing the human spirit and embracing the individuality of each of us.

Have I ever cringed watching a disabled person do something? Sure I have. I've seen blind people ski for the first time and fall down over and over again. But they get up and eventually they ski. I think it's how we interpret the falling down and the different methods and equipment we use to do things that is key here. I've also cringed watching my nephews learn to walk and struggle to read. I've even cringed watching boyfriends try to cook, much less quads.

The starts and stops of the learning process at times may be somewhat of an analogy here, I suppose, but that's not exactly what I'm talking about either. I think to fully understand what I mean one has to be around disabled people, listen to them, eat with them, and have fellowship with them. This can't happen when distancing continues.

If you don't see the beauty of a child in a wheelchair visiting a park or being surrounded by his friends in a class, you won't ever get that there's no reason to exclude him - and plenty of reasons not to. Nor will you understand his need to do things differently and have the right equipment and access.

And it's sad because we all miss out. When I meet a person who argues that distancing from the disabled is a normal reaction, I respond by saying that disability is natural and I ask if he/she turns away from nature in all its various forms. I ask if he only looks at blue butterflies or orange birds, if he dislikes thunder but wants the lightning. I question if he's ever seen beauty in the struggle of a bird to fly or in the last moments of a summer day as evening falls and dusk descends.

"Of course not - I know it all exists!" is the reply.

And so it is with us humans.

Distancing from disabled people denies them their humanity and personhood. It objectifies people - who are not unidimensional. And it hurts - everybody.

Depersonalizing Discrimination

One of the biggest disability stressors people talk to me about in my advocacy work is the difficulty they have handling incidents of discrimination. Discrimination ranges from subtle behavior and language to outright exclusion. Somewhere in the middle there is a wide variety of things that happen that you have to decide whether to tolerate, act upon or handle with a sense of humor or other skill.

I've had many people come to me who begin to feel a sense of erosion of their self worth due to repeated incidents of discrimination. They ask "Why is this happening to me?" instead of reframing it to a wider social picture: "Why are people with disabilities being treated this way?"

One of the skills that I emphasize to people with disabiliites is learning how to depersonalize discrimination. Basically it means that you take a step back and remember that the party who is discriminating against you because of your disability would act that way toward the next person who comes along with a disability as well. This helps put the incident into perspective and can keep it from being as damaging to your self esteem.

There is a form of discrimination that happens where it is very difficult not to personalize discrimination. Some people who discriminate against disabled people, particularly in groups, consciously or unconsciously will personally attack characteristics of the disabled person. They rationalize their refusal to accommodate the disabled person or include the disabled person by picking on personal traits of the person unrelated to the disability. In my advocacy work I use the word bullying to describe this behavior.

This kind of exclusion is very hard not to personalize because it is aimed at your perceived faults and the attackers are careful not to say anything about your disability. In fact they are extremely politically correct. However, it is very important to learn to spot it. When a group of people does this to you and it results in social exclusion, it's important to take a step back and assess if it's discriminatory behavior.

Why does this happen? Sadly it's easier for a group to find fault with someone whose presence requires adjustments than to make those adjustments. It's easier to just make them go away. It can be very difficult for a person with a disability to undergo an experience like this. The herd mentality of groups, bullying behaviors and negative attitudes toward disability combine to create a toxic atomosphere.

For example, I had someone come to me who was attending a women's social group for several years. The meeting place had to be moved because of her wheelchair and she noticed that the label "selfish" and the word "entitlement" started to be tossed around by some of the group members. Over time the labels continued to fly, such as "arrogant" and "difficult". By the time she talked to me, she was in tears. She told me she never had an experience like this in a group before she became disabled. This alerted me to the fact that this might not be a case where the woman really did have social skill issues or personality problems but was being discriminated against. Members of the group had effectively closed her out by labeling her - but never using the disability directly to do it.

I told her that her best option was to depersonalize the discrimination and reach out for objective reality checks, which she already started to do by talking to me. It's important to consult with members of the disability community to get feedback and do a reality check with people you trust and who know you well to see if your assessment of the situation is correct. You then need to consider your options in this situation. A lawsuit may be appropriate , e.g., if it's happening at work and your career is at stake. You also need to assess if it's worth putting yourself through any more of this behavior as well as what you can realistically do about it. Balancing these two considerations is crucial.

Since this group was directly related to her professional career, the woman chose to stand her ground, depersonalize the behavior and hang in there. Once she stopped personalizing the behavior, she reported that it was easier to cope with the group dynamics and shake off much of the negative behavior. By doing this, she not only stayed in the group but noticed that the dynamics improved based on how she reacted to the behavior.

This is not always the outcome in these situations, but knowing how to depersonalize discriminatory behaviors is a good skill for all of us to have. It can be a powerful tool against many forms of subtle (and not so subtle) discrimination.

Disability, Connectedness and Redefining Social Integration -The Need for Community Education

I've linked to a summary of an article last month in a psychiatric journal discussing the connectedness and social integration of people with psychiatric disabilities, emphasizing the need for services to consider this aspect of care and the skills needed by the folks who have psychiatric disabilities.

But what about community education?

Articles like this always get me thinking about the other side of the equation - the obstacles faced by people with disabilities when they try to integrate into society. One of our most vulnerable populations is people with mental health issues. Many of us with disabilities realize from real life experience that having social skills if you are a person with a disability isn't the entire answer. If it was, the solution would be simpler. But we have to be careful not to discount the fact that social integration is dependent on the response of others - and society.

I remember years ago talking to a vet in a wheelchair at a tennis tournament. He had used a wheelchair for over 25 years and I was newly disabled. I explained to him how I was surprised at the social difficulties I was running into in some places and with some people and he replied "Well you're going through shock right now." He went on to explain that it wasn't shock from being disabled, but shock from realizing that the reactions of some people were going to be so different because I was in a wheelchair. I tried to talk him out of that position but he wouldn't budge.

Up to that point, I had blamed myself for every interaction that went wrong. Whenever I ran into a situation where I was excluded, I blamed myself. Then I read a few books about disability studies and began to understand better what that vet was trying to tell me that day - that barriers exist because of attitudes and other factors in our society.

I applaud and support those in the field of disability studies as they strive to introduce a consideration of the societal factors as related to disability into all academic fields. An article such as this , which discusses raising the expectations for integration of people with psychiatric disabilities, calls out for a discussion from those of us advocating for the rights of the disabled about the myriad of factors involved so that we can determine what needs the system can and should address. Some of the services do need to address the skill level of the person with the disability, but some of the services also need to address community education to create a more equal playing field for those who are de-institutionalized and about to enter our communities.

In what ways do people act that promote ableism/ disablism rather than inclusion?

I've had a number of readers email me about my post Disablism Happens that I wrote for Blogging Against Disablism Day.

1 reader emailed me that those of us who blogged against disablism are imagining it or making it up .

5 readers emailed me that it made them think about ways they practice disablism when they're alone. Apparently that line struck many readers. Three of them were able bodied and two were disabled.

Two of them emphasized how they struggle from exclusion at their jobs. One woman has a co worker who is disabled and it never occurred to her that she had treated this woman differently until she read a BADD post written by a woman with a disability and learned that she and her coworkers were excluding their coworker.

Another reader is disabled and wrote about how he is excluded at work socially and has experienced a pattern of discrimination in pay and promotions. He wrote:

"When two other employees left, I "inherited" their jobs without receiving an increase in pay. When I began to question this, I discovered that my base salary was much lower than that of able bodied employees in the same job. I was hesitant to hire an attorney about this problem but based on how I am treated overall at my job I'm unwilling to work for less than people who sit next to me and then exclude me from office parties by forgetting to tell me about them. Forget lunch invitations - it never happens. This is more hurtful than anything I went through at school as a kid. I got along with everyone in school..."

These emails continue to lead me to reflect upon the question :

In what ways do people act that continue to promote ableism or disablism rather than inclusion?

Chart on Categories of Bullying Behavior

I use this chart when dealing with school systems about bullying of a student with disabilities. Sometimes I am called in cases where this is occurring.

It helps staff recognize behaviors that are bullying in three categories: physical, verbal and social - which otherwise might be dismissed as acceptable. The problem is that when level 1 behaviors escalate to level 2 and 3, the behaviors become more difficult to manage, particularly in groups. For example, in Level 2 it is typical for the bully to blame the targeted student and unfortunately the staff may join in on this not recognizing this as an escalated bullying behavior. I know of cases where students with disabilities have had to transfer schools because bullying had escalated to such a degree.

By recognizing bullying behaviors early, staff can better handle situations and refer students to appropriate resources, whether it be counseling or disciplinary referrals.

As an aside, adults may engage in some of these behaviors toward other people (with or without disabilities). Spreading rumors, engaging in gossip and gestures and nonverbal behaviors are bullying toward another and escalate as you can see on the chart. I have seen this occur as part of a "herd mentality" in which the majority practices exclusion , a level 2 (and sometimes 3) behavior that you can see in the chart.