“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Wednesday, April 23, 2008


The Foundation for Inclusive Religious Education is a group sponsored by the Catholic Church.  The goal of the foundation is that they grant
...children with special needs the remarkable opportunity to receive a Catholic education in their parish schools.  In 1996, a group of parents founded F.I.R.E. to realize a common dream for their children with special needs to attend parish schools with their siblings and neighbors.  Since F.I.R.E.'s founding, the non-profit has provided essential financial grants to schools within the Diocese of Kansas City-St. Joseph...
God bless the Kansas City - St. Joseph Diocese for their efforts in this area.  May efforts like these increase within the Catholic church, and the Christian church in general.  The figures for Christian schools offering education services for children with disabilities are dismal (for some more information, see a brief article I wrote for the NACSPED news).  We should follow the example of this diocese.

May F.I.R.E. be inundated with requests for help as other Christian schools catch their vision.


Tuesday, April 22, 2008

Beating each other up

So, in the past 2 months, I have been an advocate for a family with a school district that apparently has been beating up on some parents, and I am going to be an "inspirational" speaker for a different school district, encouraging teachers because the parents and their advocates have been beating up on the teachers. So like a scene out of Clint Eastwood's Fistfull of dollars I am in the midst of playing both sides (although my movie would not be a Fistfull of dollars because unlike Eastwood's character, I am not charging anything, which is not a complaint as I am happy to be an advocate and an encourager for both sides). It is all about the best services for children with disabilities.

Parents too often are placed in the position where they have to fight school districts or any other agents of the state for appropriate services. Schools have limited resources and they attempt to cut corners where they can. So if they can cut corners for your child, then they can serve another child whose has parents who are more active advocates. But I don't want them to cut corners for my child so I fight to get the services that I feel my child needs. Schools will sometimes play games with parents such that parents get tired of being pushed around, or tired of not receiving services, or tired of having their rights stepped on, so they find an advocate, or someone like me who only is interested in the best services being provided for a child. The difference is that by bringing an advocate, or someone like myself into the meetings, the school district acts differently. Even something as simple as the time alloted for the meeting changes from being brief, to as long as it takes. Services providers cannot brow beat parents because someone is in the room who knows the parents' rights. In one meeting, for example, one of the professionals on the school district's side, was pushing a particular IEP goal that the parents were not interested in. The parents tried several times to express that they were not interested in the goal, but the district kept pushing. Finally I spoke up and stated, "The parents do not want this objective so it is dead." Nothing more was said about the objective because that is the parents' right in the IEP meeting and although everyone knew it, the parents were not responding to the districts assertive position with assertions of their own. In spite of what are hopefully the best intentions, schools are villiainzed by parents because they may find that the only way they can get services is to fight. And unfortunately, the fact of the matter is that those who fight often get the best services.

On the other side of the coin are the teachers. Of course there are slackers as there in any job, but largely I believe that teachers are doing their best for their students. Some parents, however, are entirely unable to be satisfied. At times there are issues of not being able to accept their child's disability (I know of parents who want the district to work on reading for a 20+ year old who has not been able to learn to read for their entire school career), or being unreasonable about services (demanding one or more aides, or private school services, or myriad other programs that they may have heard about), or bringing in experts whose sole purpose is to make the district look foolish or to sue. These people are not helpful, because it is true that districts do not have unlimited resources. It is also true that as hard as teachers may try, they are not perfect. There are very few "perfect" classrooms for students with intellectual disabilities, for example, so it is easy to observe a classroom and find fault. Some aspects of programs are considered the most basic of best practices. I try to impress upon my student teachers the importance of instructional data to ensure teacher accountability. However, other aspects are simply opinion. But if I as a parent have an opinion because I saw something on a television program, or read some controversial book, I begin to demand this or that particular program for my child when the teacher may be feeling that there is no empirical evidence supporting a particular approach and the approach is also very expensive. There are many such approaches out there that have great zealots behind them and not a shred of research data supporting the fact that the approach does anything. But parents who may be desperate to find anything that might work with their child are sucked into promises, and then demand services at the local school.

So the educational system is such that teachers feel beat up by parents and advocates, and parents feel beat up by schools and professionals. The system is adversarial at nearly every level. It can even be adversarial between agencies, where some agencies think that they are God's gift as advocates and are quick to villianize other agencies. They become indignant should anyone make any accusations toward them, however. But being a friend of parents, I could tell you stories of unsatisfied parents and family members, and professionals who feel put upon by EVERY state agency.

But I, in response, will continue to advocate for parents for the best services for their offspring from any agency, and I will continue to encourage teachers to be the professionals they are, and to use best practices, and practice accountability.


Tuesday, April 15, 2008

Getting into "trouble"?

Recently I have had an interesting experience that I guess I should have expected, but didn't and have been a bit taken by surprise.  As I have mentioned elsewhere in this blog, there is a group home close by to my home that I like to visit once per week.  The people who live in the home also attend my church.  They are all adults who also experience moderate to severe intellectual disabilities.

Anyway, over the past couple of years, the lives of the group home residents have improved a bit, I would argue, as a result of their participation in church.  I mean not only do they participate in activities on Sunday morning, but they also go with both church and community groups (Rotary and high school service clubs) to ball games (major and minor league baseball, high school basketball and football that we at the church facilitate), have attended concerts and an occasional play, a yearly shopping spree, as well as going to swim parties, movie nights at church, speaking in classes for students study special education, and just generally going out for a meal now and then.  I as one of the main people facilitating these outings have gotten fingerprinted (see my entry on fingerprinting) and am an approved person to be with the folks. 

Anyway, the group home has received increased scrutiny because of the small move toward regular lives that the people are experiencing.  Social workers are concerned that the residents are interacting with people at church who are not finger printed.  They are concerned that they are going to ball games with people who are not finger printed.  They are concerned that when they come to address my classes, addresses that have proved to be truly life changing for the students whom they address (I will have to share about that in another entry sometime), that in actuality they are being "put on display" in some form of disparaging manner, I can only assume because the regulators must think that the residents have nothing to say to a class of university students.

I think that they are making these assumptions and raising these concerns as people who live in group homes are supposed to live there in isolation without the presence of people from the community who might actually be interested in developing a relationship, making friends with them because that, sadly, is the experience of most people living in such a situation.  I really do understand the desire on the part of professionals to protect people from victimization.  But I also recognize that no one can be totally protected, and that one just has to use his best judgement in looking at relationships with community members.  Clearly, the community has been sensitized to the horrible behavior of what is comparatively a handful of religious people, however, one can be wise without being ridiculous.  The fact that the vast majority of interactions between children and priests, for example, have been edifying and a blessing, does not diminish the fact that a small group of people are evil, but it does point to the fact that the vast majority of interactions are edifying and a blessing.  It has also changed the manner in which all people interact in religious settings.  For example, I myself when out in the community with friends with intellectual disabilities, will be careful to avoid being in a car alone with a disabled woman, even if just driving her home.  I will always attempt to take women home first and then the men second.  That is just common sense.

It is also interesting that professionals in disability related services will speak of their desire for things like community integration, and normalization , and friendship.  However, it is interesting that when it actually occurs, they don't know what to do with it, and rather than allowing something natural to occur, something like friendship, they will attempt to regulate it, and in effect destroy it.  In my own situation, I can already see the group home owner pulling back a bit, and who can blame her?  Why should she risk getting into trouble with regulating agencies who will come the home looking for something wrong, and expressing a judgmental attitude at the positive things that might be happening?  I am sure her thinking is, "If I just keep the people in the house and not give them access to the outside world, I would be much better off."  No doubt that is the reason for the punishing attitude of the social workers and other regulating agencies as well.  "Quit doing the community integration stuff.  You need to be regulated by us if you are going to have your residents develop friendships.  How dare you do something apart from our regulation."  One can only assume that they would then be happy if the group home residents left daily for their adult day care setting where they are often treated as children, and then just come home and stay in the house.  Case workers will decry the fact that group home owners will run to the store for a gallon of milk, take one of the residents and count that as one of the required monthly outings.  But when people are engaged in real outings with real friends, I guess their "handlers" are considered trouble makers.

This is another barrier that churches must be prepared to face in attempting to do disability ministry. We have decades of uncaring attitudes of churches and protectionist attitudes by professionals.  As we, the church, begin to reach out to those we have ignored, we must expect to find resistance on the part of the protectionists, because their structures for the way they do their services were designed without a group like the church taking an interest in group home clients to the point of wanting they to be participating members.  So although they talk a good integration game, in reality they are a part of the problem, by their own design.

But the problem of the woman who runs the group home that I visit, is that she got into the group home business because she loves and wants to serve adults with intellectual disabilities.  She wants the very best for them, in spite of the way in which the agencies would regulate or intimidate and try to scare her.  Not only does she recognize that her residents are people who want to have a full life, she also recognizes that they are people who desire to express the spiritual side of their lives.

So, apparently integration of adults with intellectual disabilities into the community is a fight with the church to want to integrate them and a fight with the state to allow the integration to occur.  Apparently the church is not the only one who claims to stand for one thing and do something else.  The state can and apparently is hypocritical in its approach to community integration, saying they want it, but regulating and punishing and frustrating efforts at integration.


Wednesday, April 09, 2008

"People with mental retardation & sexual abuse"

The following is from an article by Leigh Ann Reynolds entitled, "People with mental retardation & sexual abuse."
  • >90% of people with developmental disabilities will experience sexual abuse at some point in their lives
  • 49% will experience 10 or more abusive incidents
  • 36-68% of girls and 16-30% of boys will be sexually abused before their 18th birday
  • 15,000-19,000 people with developmental disabilities are raped each year in the United States
  • 97-99% of abusers are known and trusted by the victim
  • 32% of abusers were family members or acquaintances
  • 44% had a relationship with the victim specifically related to the person's disaiblity (such as residential care staff, transportation providers and personal care attendants)
  • Abusers typically abuse as many as 70 people before ever getting caught
The article defines sexual abuse fairly concisely such that the reader knows what the author is speaking about.

There are a variety of lessons from these statistics, not the least of which is that people who are facilitating disability ministry must be cognizant of interactions between persons with developmental/intellectual disabilities and the general public. We should be aware of situations at the church and other community settings as well as having a presence in the group homes and living situations of persons with disabilities. The article also lists physical signs, behavioral signs and circumstantial signs that people may look for. The article is concluded with the statement, "You do not need proof to file a report."

The church has a protective function to serve in the lives of persons with severe disabilities, however, we can only serve that function if we are involved in the lives of persons with severe disabilities. We need to be aware of the signs of abuse and not be afraid to ask questions of individuals with disabilities and their care providers should we have a concern. Ultimately we can report to the police if we believe something untoward is occuring in the life of a person with a severe disability.


Tuesday, April 08, 2008

More on stigma

Dr. Marc Gold was a professor in the 1980's at the University of Illinois. He pioneered educational strategies for persons with severe cognitive disabilities through his "Try another way" approach. Specifically he proved that persons with intellectual disabilities could be trained to do complex tasks. He produced a movie whereby he showed people assembling bicycle brakes, ultimately at an error rate less than that performed by people without disabilities.

One of Dr. Gold's ideas was the "competence/deviance" hypothesis. He theorized that competence and deviance are somewhat like the scale above in that they are in a kind of a balance. He also said that the more competence a person has, the more deviance is tolerated in that individual. We see that in Hollywood actors and professional athletes. As long as you can produce on the athletic field, you can act very deviantly in your personal life. As long as you bring money in with your films, you can do crazy things that the average person would never get away with. Your perceived competence outweighs your perceived deviance.

One could apply this same theory to persons with various disabilities. If you have a visible disability, society will conisder that difference a form of deviance and devalue you. You will therefore need to have additional competence in some area to balance out that deviance in order to be accepted by society, or not devalued by society.

As people attempting to assist people with disabilities to be accepted by society, we attempt to minimize their "deviance" by not adding to it by the things we do. For example, if I treat an adult with a severe intellectual disability like a child, I am communicating to society that this man or woman is a child by virtue of their disability. The individual enters a social situation potentially being devalued by virtue of their disability, and I then further contribute to their devaluing by what I do. As the graphic above shows with the arrows on the deviance side, I contribute to the deviance that the person is perceived to have by the environment. I, therefore, will try to do all that I can to NOT add to the perceived deviance through the things that I do. So I will treat the individual as an adult, I will use adult language, I will facilitate their participation in adult settings, we will engage in adult activities, etc. The intellectually disabled man will come to social settings with their "deviance" however, I will do as little as possible to contribute to their further devaluing by society.

You might counter that I am playing a sort of "game" implying that I am trying to trick society into believing that the intellectually disabled person is something other than he actually is. I am not trying to have him portrayed as something other than he is, but I am trying to assist him to be portrayed as normally as possible so that there would be a greater liklihood that societal members will choose to interact with him. Once their connection is made with him, he will sink or swim socially based upon his skills and the flexibility of the person with whom he is interacting. My goal is to have him approached in an age appropriate manner, to be approached as an adult with the characteristics that are part of his impairment but without any further stigmatizing characteristics that I would add to him through my interactions with him.

It is a game, but it is a game that must be played in a sinful, imperfect world. I would wish that a person would be accepted, would be loved, would be interacted with independent of characteristics he might have related to an impairment, however, I recognize that in a sinful world, people who are even the least bit different are rejected. In a perfect world they would not be but I don't live in a perfect world. Therefore, I attempt to minimize stigma by not adding to it by what I do.

What does this have to do with disability ministry? I am sure you have already seen a variety of connections, but my point is that I will not do anything in the adult Sunday School class I teach that would not be done in most any other adult Sunday School class. So if the other adult classes are not coloring pictures, my class will not color pictures. If the other adult classes are not singing "Jesus loves the little children" I will not sing that song. If the other adult classes are having snacks then we will too. If the other adult classes support a missionary with their finances then we will too. And so on and so on. Sometimes the stigmatization that comes from the things that we do with adults with intellectual disabilities that contributes to their perceived "deviance" has a lot to do with how WE perceive them. We perceive them as children when they are adults so we do children's activities and crafts. We are telling those around us who we think people with disabilities are by what we do with them and how we interact with them. Would you as an adult participate in a class that does what you do in your class? I would challenge you to try to export the activities you are doing to other adult classes if you do.

As those in ministry, the church is looking to us to tell them who people with disabilities are. We do adults no favors if we communicate to the church that they are children. We do them no favors if we communicate that they are different. Better to just have them sit quietly in regular church programs without understanding than to create a program whose activities demean, devalue and paint them as deviant.