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Posts Tagged ‘disabilities’

My son finishes work early.  He has a para that takes him out to the library when he’s done, so as to not disturb the class.  He spends a lot of time there.

He has a Kindle, so he has plenty to read at all times. The school itself (Washington Middle School in Dubuque) has kindles to loan out to students, too.  

His para, for whatever reason, thinks that Kindles are a disgrace.  She first banned him from reading whatever he wanted on it, even though he reads adult science books, and Greek classics.  He could only read what was assigned in school.

Then she decided that was unacceptable.  On Friday, she ripped it out of his hands, went to the shelves, found the book he was reading, and threw it down in front of him.  For whatever reason, she would not allow him to read it on the Kindle.

It is bad enough they wouldn’t put him in gifted classes because he has a learning disability (dysgraphia, cannot write legibly), but now to discourage reading advanced books, and only read school books on paper? What is wrong with this place?

We’re taking him out of school after this year, and using the virtual public school until we move out of Dubuque. When you have staff acting against the child’s best interests, you need to pull your child out.  This is just the latest in a string of incidents with this woman, and it’s the last straw.

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I no longer think that Dubuque is a good place to raise a family. In fact, if you have a child with a disability, you may be better off elsewhere.  It’s not bad, and better than what we would have had in New York City, but I’ve been looking around and there seem to be better places.  Madison, WI is one place we’re looking at, and if it wasn’t for Walker, it would be close to perfect.

But the bloom is off the rose, and Dubuque, which once seemed a very grounded and open place, has turned to the usual bad habits of many cities.  The politicians are inaccessible, the police are unethical, and the laws are now going from protecting citizens to generating money off of them. Schools get cut, but special pet projects do not.  Small businesses suffer at the hands of larger ones. They found a way to get rid of undesirable “people from Chicago” (code word for black) legally.  Discrimination is almost as rampant as apathy and ignorance.  There are few people with strong convictions here, and it shows.

I want to fight for a community that fights with me, for me, alongside me. I’ll be the best thing that ever happened!  

We still have to ride it out more than a year, since we do want our daughter to graduate from the local high school. It would be foolish to pull her out now.  But if we can figure out how to make it work, we need to go to a good city, one that is family friendly.

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If you’re a parent with a child on the spectrum, you’ve probably responded to the same annoying remarks and questions a thousand times. Here’s a handy list of responses that…you’ll probably never use out loud (but are fun to imagine using)!

via Top 10 snappy answers to annoying comments about autism | Autism Support Network.

I need to memorize these…

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My son started Camp Bee A Friend this week. This camp pairs off children on the autism spectrum with their typically developing peers, sharing the camp experience together. It’s not about therapy, academics, things like that, it is camp. Real camp with camp activities. Fishing and swimming and crafts and lunch and songs and games and sports and all the typical day camp stuff — something that kids on the spectrum, particularly ones like mine, don’t really get to experience.

Now, one of my fears with Ted is that he’d be alone when we were gone. That the only people who would be with him would be obligated to. Family members, and people who work with him. Maybe a roommate in an apartment or group home. It’s one of the things that makes me sad, the thought my son may never have a partner, a family, a social life. He’s still non verbal, and he doesn’t really notice other people a lot. He doesn’t interact, usually. And since there are a lot of things he doesn’t understand, what could he bring to the table, friendship-wise? This breaks my heart on a regular basis. I try not to think about it, because it makes me want to die inside.

Well, when he got on the bus to go to camp, another kid came by. He looked at the open doors, looked over the seats, and said, “I want to sit next to Ted!” I smiled, I made a pleasant remark to one of the staff members standing there (as well as continued to discuss how Ted doesn’t eat lunch) and left.

And then proceeded to cry the entire drive home.

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Since last year’s annual meeting with the Department of Human Services Case Management, the terminology has changed for one of the services my son gets.

In the past, he was on the “MR Waiver”.  MR = Mental Retardation Waiver. In other words, it was medicaid eligibility based not on income, but on his diagnosis, and all the support services that comes with it.  (They also have a Brain Injury Waiver, an Ill and Handicapped Child Waiver, and others.)

He now has the “ID Waiver” which stands for intellectual disability. This, to me, has less of a stigma. It also is more hopeful, I think.  It also should open up services for those who have significant difficulties but score higher on IQ tests.  Before, your child had to score low on standardized tests.  This hopefully will open the door to more people who need services getting what they need.

So even the government understands the issues around using the word ‘retarded’.  Now if only more people could be sensitive about it, too.

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Using the word “retarded” casually as an insult is highly offensive. People with developmental delays and other disabilities face many forms of discrimination and abuse, and language like that makes it easier for them to be victimized. Those who use the word not only look stupid, but can really hurt their audience.

“Don’t get retarded with me, answer your phone!”

“Why are you giving me detention, that’s retarded!”

“Those shoes make you look like a retard.”

Day in, and day out, people use the word retarded as an insult. The reality is, every day, people have to live with the medical diagnosis of mental retardation (“Intellectual Disability / Mental,” 2005). They deserve more respect than to be reduced to a disparaging term in the streets, on playgrounds, in offices. They are human beings who are the target of much discrimination, and deserve more respect than what they have been given. To use this word in a derogatory manner can be just as harmful as using the word “gay” as an insult – just ask the mothers of two eleven year old boys how harmful that can be, those two boys in two different states, on two different days, that hung themselves when they were called “gay” over and over again (Blow, 2009).

Every day, people with developmental disabilities are denied many rights and privileges we take for granted. We can choose our chores at home, when we can have visitors or get phone calls. Some in group housing don’t get that luxury, according to Caren Durnst, a supervisor in a group-housing setting. We can chose our own job, and work for a decent wage. Those deemed disabled enough to qualify for certain benefits needed to live independently can only work for limited amounts of money, or they loose their support network; in fact, they aren’t even allowed to have more than meager savings(“SS Resources,” 2009). Those who work in ‘sheltered workshops’ can legally be paid less than minimum wage (Fair Labor Standards Act (FLSA), 2009). They can be put into classrooms isolated from their peers, denied access to classes they might enjoy,and discouraged from real academic pursuits (“Program Criteria: Special,” n.d.). In Bertha, MN, a thirteen year old autistic boy was forbidden by the courts to go to Mass at his local Roman Catholic Church. When his mother got in the car to take him, the county Sheriff met her to tell her that she would be arrested if she took her son to Mass (Pabst, 2008). Perhaps the worst of all, some are denied medical care (U.S. Public Health Service, 2001, p. 28). The American College of Obstetricians and Gynecologists even has guidelines as to under what circumstances you can sterilize a disabled person (“Sterilization of Women”, 2007 p. 2).

Despite all this, many people with developmental disabilities and cognitive difficulties live full and independent lives. They work, they play, they love, they marry (Kaufman, 1988/1999 ). They do what they can despite their intellectual limitations. So what do you mean when you call something retarded? It works hard? It struggles and tries its best to overcome obstacles? If you call someone a retard does that mean they are someone who works hard in school even without the support they need? Probably not.

The current campaign, “Change the Conversation” (The R-word, n.d.), makes us all too aware how much those who are mentally retarded understand what is meant when it is used as an insult. They have a voice, and they are speaking clearly. If anyone uses the excuse that “they” don’t care if it is used as an insult, “they” do. For people without cognitive difficulties why is it so hard to understand how people with MR (mental retardation) feel about it? When you use a word like this, you objectify people. “Retards” aren’t people anymore. They’re objects. They are no longer human (Special Olympics and the Center for Social Development and Education, Gallup Organization, Research and Evaluation Services of Northern Ireland, & Center for Survey Research, n.d.). It builds up, and gets easier and easier to toss those words around. The less important you think it is, the more affected you’ve been by that word. The less important we all think it is, the easier it is to discriminate and abuse those who are developmentally disabled. It’s easier to deny them a seat in a science class, or not give them a chance in the workplace. Why? Because we’ve reduced the to sub-human level, and do not have to treat them like we’d treat a ‘normal’ person. The more the “r-word” is used, the more degraded they are, and the more acceptable it is to treat them like so much garbage.

Using this kind of language is poor English, period. Those who use that word risk the look of looking uneducated, lower class, cruel, and unsophisticated (Bendersky, 2009 ). Studies show that even children look down upon peers who use the word, even if they are not willing to speak out(Harris Interactive, Special Olympics Global Collaborating Center at the University of Massachusetts Boston, & Special Olympics, n.d.). Using those words makes a bad impression. Those words used in the wrong context hurt a lot of people. First of all, the person being called retarded, whether or not they are, knows what the name-caller means by it. Those who are experiencing those disabilities can feel hurt too (The R-word, n.d.) . There is also pain to those who love them, who feel protective of their family and friends. Doesn’t everyone feel protective of those they love? Those that use the word become bullies, picking on those who they perceive as inferior to them. They can only see their privileged world view where the only way to live is as a ‘normal’ person with no disabilities, no problems (Byrne, 2000, pp. 45-72). To them, the only life worth living is one without “being retarded”.

There are plenty of reasons not to use “the R-Word”. Think for a minute of one very simple one. Every time that word is used in front of me, personally, I die a little inside. I am wounded by the words of people who think my son, the light of my life, is a person of less value than anyone else. So please, don’t use words that describe very real people as insults.

References

Bendersky, A. (2009, April 1). That’s retarded. You’re so gay. Is either ok? Message posted to http://hottopics.gay.com/2009/03/thats-retarded-youre-so-gay-is-either-ok.html Blow, C. M. (2009, April 24).

Two little boys. Message posted to http://blow.blogs.nytimes.com/2009/04/24/two-little-boys/

Byrne, P. (2000). Philosophical and ethical problems in mental handicap. Basingstoke, UK: Palgrave Macmillan.

Fair Labor Standards Act (FLSA), 29 U.S.C. § 8 (2009), http://www.dol.gov/elaws/esa/flsa/14c/.

Harris Interactive, Special Olympics Global Collaborating Center at the University of Massachusetts Boston,, & Special Olympics. (n.d.). R-Word campaign [Survey Results]. Retrieved April 23, 2009, from University of Massachusetts, Center for Social Development & Education (CSDE) Web site: http://www.csde.umb.edu/rs_r_word.html

Intellectual disability / mental retardation. (2005, October 29). Developmental disabilities [Article]. Retrieved April 29, 2009, from Department of Health and Human Services, Center for Disease Control and Prevention Web site: http://www.cdc.gov/ncbddd/dd/ddmr.htm

Kaufman, S. Z. (1999). Retarded isn’t stupid, Mom! (2nd ed.). Baltimore: Paul H. Brookes. (Original work published 1988) Pabst, L. (2008, May 19).

After warning, family of autistic teen attends different church. Star Tribune. Retrieved April 29, 2009, from http://www.startribune.com/lifestyle/faith/19059069.html

Program criteria: Special class programs, secondary, and vocational rehabilitation. (n.d.). Self-contained special education classes [Criteria for placement]. Retrieved April 25, 2009, from Newark Public Schools Web site: http://www.nps.k12.nj.us/Special%20Education/Training%20Modules/Spe.%20Ed%20Programs/Self%20Contained%20Classes.htm

The r-word [Campaign to end use of “The R-Word”]. (n.d.). Retrieved April 22, 2009, from The Special Olympics/ Joseph P. Kennedy, Jr. Foundation Web site: http://www.r-word.org/

Special Olympics and the Center for Social Development and Education, Gallup Organization, Research and Evaluation Services of Northern Ireland, & Center for Survey Research. (n.d.). Multinational study of attitudes toward individuals with intellectual disabilities [Research results]. Retrieved April 22, 2009, from Special Olympics Web site: http://info.specialolympics.org/Special+Olympics+Public+Website/English/Initiatives/Research/Attitude_Research/Multinational+Study.htm

SS resources. (2009, April 28). Understanding supplemental security income [Fact Sheet]. Retrieved April 29, 2009, from Social Security Administration Web site: http://www.ssa.gov/ssi/text-resources-ussi.htm

Sterilization of women, including those with mental disabilities [Monograph]. (2007). ACOG Committee Opinion, (Serial No. 371). U.S. Public Health Service. (2001, February).

Closing the gap : a national blueprint to improve the health of persons with mental retardation (D. Alexander, Ed.). Rockville, MD.

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They changed the pick up point for my youngest; he now gets picked up in front of the house, not across the street.  So today I got to see him as the bus pulled away.  He looked at me briefly as they buckled him in, and then looked straight ahead. The thing about a non verbal kid is it is harder to know what they are thinking — as if people weren’t vague enough about their thoughts.  I wondered what he thinks about school. I know he seems to enjoy going.  Does he have any idea at all what the purpose is?  I’m really not sure, and leaning towards “no”. Every year the local newspaper, the Telegraph Herald asks the incoming kindergarten students what they want to be when they grow up.  There are all sorts of answers. Ballerinas and cowboys and doctors and singers and dancers and mechanics and truck drivers and babysitters andteachers and astronauts and anything a little kid can imagine. I wonder what my son would answer, if he could.  I know what I would want him to answer.  Independent. And that is what life is like with a kid like mine. Your dreams change. Your expectations are in a sense lowered. (But raised because you are aware of how hard each task is.)  When nothing but the finest schools and a doctorate in their chosen profession is just about shot down in flames when the prognosis is “I don’t know” for so many issues.  It’s not so bad, really.  Still, days like today, independence seems like such a great dream, but the thought that even independence may not be possible? That’s what can really hurt. By the way, his bus isn’t short, but it is chock full of kids who may face the same future as my son. Some more independent than others.  Think about that the next time you make a ‘short bus’ joke. About the parents that put their kids on that bus, and take them off the bus, if you don’t have the decency to think about the children because you think of them as less than human.  Think about me.

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