This weekend, ARK will have their annual “Buddy Walk“.

This is an event, from what I can tell, that raises money for the disabled in Dubuque, and has ‘normal’ people pair up and hang out with disabled people/children.

I have so many mixed feelings about this.

It is very important that everyone sees people with disabilities as people. A day like this, though? So someone is friends with my son for a day. My son then ceases to be a person, but becomes an object lesson. “This is a disabled child. Look, he can play games too! Let’s raise some money and feel good about ourselves by playing with kids like him!”

What are the odds of any of the parents there exchanging phone numbers with me so their children can play with Ted any old day? Slim, I bet.

On the one hand, I do want to normalize things. I want people to see Ted, and others like him, as just people. But how much should that be my burden? How much should it be his burden? Should he be in the newspaper, looking cute, surrounded by ‘regular’ kids, smiling benevolently as they take time out from a Saturday to be with my son? Would they turn him down for a kid that ‘looks retarded’ instead? Because a lot of pictures showed one person who didn’t quite look normal surrounded by smiling normal-looking people. And something tells me they do that on purpose.

I did get great advice from a F(f)riend. To go if it is something Ted will enjoy. That will be my criteria for going this weekend. Still, a part of me is very uncomfortable at what on some level feels like the objectification of people with disabilities. It’s like feeding the hungry on Thanksgiving, only, or sponsoring a family for Christmas. Once the day is done, and the kiddies learned the lesson about charity, the families still go back to their regular lives.

At the end of the day, the families who are there on Saturday are still the have, and have-nots. They’ll go home and have dinner and conversation and plans for a future that includes living alone, driving a car, having a career, college perhaps, marriage, children, dating, friendships. Mine will go home wondering if we will ever get a communication device that doesn’t suck, and how well my son did at his ‘vocational training’ where he is taught to shred paper and put chairs on desks. Yes, they hope maybe they can teach my son to do some cleaning work when he grows up, and actually be a ‘productive member of society’. Your kids are learning algebra and Spanish, mine is learning how to clean up after your kids.

Maybe the buddy walk will at least teach your kids to smile kindly as my kid wipes your table clean at McDonald’s when he’s 40, after yours spilled something all over the place, instead of looking impatiently as he shuffles over and is unable to talk to you because, you know, that whole inability to speak thing.

I guess I’m on some list of Dubuque blogs, I really should post more, but I don’t. Time to get cracking, I’ve got a lot to say, about a lot of things. Sex ed, drug busts, alcohol, going green, special ed, and more. And pictures, I’ve been a picture taking fool lately.

I should at least review the local Apple Wine I tried recently. That stuff was GOOD.

Delaware County Fair 007

Originally uploaded by Kibbles

Had an absolute BLAST! Was the first time I ever went to a county fair, it was so much fun! I can’t wait to go to the Dubuque fair, and maybe the Jackson County one, too.

I say you might as well buy a bottle of Dr. Bronner’s Magic Soap.

You get your advice, your platitudes, but you also get clean. Self help books? No practical use, for the most part.

So save your money, save the planet, and buy soap.

I like the peppermint, myself. It’s so tingly!

Today, I got my first box from Little Tree CSA. For those of you who don’t know, this arrangement means that in exchange for cash monies, every week I get a box, a share from the farm. A box filled with good, yummy things. This box of fresh deliciousness will arrive every Saturday morning at the Dubuque Farmer’s Market until the end of the season (October).

This box contains spinach, lettuce, radish, chicken of the woods mushroom, micro greens, kale, garlic, chives, purplette onions, mint, lemon balm, and wild ginger. I had no idea what they would have this early on, I figured it would be lettuce, radishes, and more radishes. I can’t imagine how much this is going to change over time, because it’s already so much!

What I like about something like this is the way it compels me to eat better, to eat creatively. Organic and localvore issues aside (this fills both roles), what really matters is variety in the diet, to me. If I did not have this box, I would have got the usual produce, half at the supermarket, half at the farmer’s market, half from my own garden. I’d go for the old standbys. Now, microgreens? What will I do with those? How about the kale? I could use more of that green and leafy in my life. Chicken mushrooms? It looks fantastic! Things I would not go out of my way to eat, I will be eating now. Think of how good that is for my diet. Not only does it increase my exposure to healthy food, by granting me access to it, it increases the nutritional value of my diet. You can’t help but ensure a greater variety of nutrients when you have a greater variety of fresh food.

What am I snacking on right now? Microgreens. Until 30 seconds ago, never ate it in my life. Considering that I would normally poke around the kitchen for processed crap, this is a massive improvement. This really ups my veg intake a lot, investing in a CSA like this.

CSAs don’t come cheap, mind you. I’m paying $500, broken up over the months, for the boxes, which is about $25 a week. Well worth it, but there is an upfront cost. However, for fresh, local, organic food, it is a huge savings. I got far more than I would have had I gone and bought each bit individually. Some CSAs offer (or require) some work in exchange for the share, too. It depends on which one you join.

Most of them, like mine, have a newsletter, too. I’ve got recipes that are tailored to what is in this week’s box. And notice how I said “mine” there? It’s how I feel. The CSA concept makes me feel like part of the farm. Like an investor. I mean, that is kind of what it is, but who feels that way when they get stock in a company? Here, I am meeting the people, reading the newsletters, talking to them, getting to know them. It’s something I always loved about the Farmer’s Market, knowing where my food is coming from. But the CSA is even more of a bond, because of the regularity. We’re in this together! They said they were exited giving out the first boxes, and I was excited to get it. MY box, from MY CSA. How often do you think that about what you eat? It’s topped only by eating from my garden.

For information on CSAs, including where to find one near you in the United States, check out this website. It also links to farmer’s markets and other sources of local food.

This is going to be a GREAT summer. I can feel it!

I read today about the Roman Catholic church denying First Communion to disabled, as policy, when I was looking up the story of the Roman Catholic Parish that got a judge to ban a family from attending Mass — to the point where a sheriff was waiting outside the home to arrest a family if they tried to attend.

I compared this to my own small Quaker worship group, which has been very inviting to my seven year old, non verbal child with PDD-NOS.

It makes me wonder what other policies are out there. A faith that insists that you understand the host is the body of Christ is going to be less inclined to give a child communion. In the case of the child denied, he had ‘oral defensiveness’ and could put the host in his mouth, but his father had to finish it. (My own son was unable to eat from birth — so it is a matter of medicine, not being ‘difficult’.) What would a different church do? I know of another child who is facing a possibility of being barred from his first communion for his disabilities, involving his ability to cope with large crowds. What about Bar Mitzvahs? Are those only for those who can read, memorize, perform in front of others?

As our children are out of institutions, and in our communities, our faiths need to decide what role they will ‘allow’ our children to have in their churches, temples, meetinghouses, places of worship.

Understand, though, as parents, if we feel that you are rejecting our children for their disabilities, we may very well reject you. It makes me sad to know that this is ok, and perhaps even desirable with some religions. But we’re not going away. Our children aren’t locked up any more, and we want them to be full members of our communities.

Will our religions step up to the plate? Or will they turn their backs on us.

I’m glad my group of Friends stepped up. I’m sad to read about others (primarily the Catholic Church) that said no. These people need to be members of the faith community, not just recipients of social services from them. (But then, as members of the community, they may not have much to donate, if they can’t work. However, Catholic Charities and the like DO make money off the government offering various services to the disabled.)

When it comes to communion, I can understand not taking it because you’re not in a state of grace, or whatever (I, personally will not take whereas other ‘lapsed (Roman) Catholics will), because that is a religious barrier, one that has to do with you at that moment in time. But when you are taking people who may be born with an inability to ever do it, or who for whatever reason have to stop later on, for medical reasons, then that isn’t very fair, and to me, not very loving. Does God care to what extent you can vocalize the meaning of the act to you? Or does God know your heart, and approve?

I would go so far as to say it is morally wrong to deny someone communion for those reasons, as you are taking God’s most vulnerable and denying them Him on that level. Do we, as “able bodied” adults have a responsibility to make sure that others partake in His rituals as much as possible? I think so.

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Originally uploaded by Kibbles

Took the boys fishing at O’Leary lake, in Wisconsin. Kay was there, too — click on photo for the rest.

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Originally uploaded by Kibbles

We went to the one in Dubuque today. Ted liked the koi pond best.

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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Originally uploaded by Kibbles

We went today.
Faith
Peace
Chastity
Mildness
Long Suffering
Patience