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Feministe Feedback: Why is Inclusion of People with Disabilities Important?

Jill

A Feministe reader has been asked to give the “parent’s point of view” on inclusion for her city’s recreation center. She writes in looking for information, talking points and a wider context so that she can most effectively advocate for people with disabilities.

She writes:

Why is inclusion of people with disabilities important? Especially in terms of childcare and recreational services for children with disabilities.

Having affordable childcare for my child with a disability (autism) that offered inclusion services has been invaluable to me as a mother who works outside the home, especially as a single mom/bread winner. But it has also been important for my son, who gets to experience the same things as his NT peers do.

I have been asked to give a little talk on Saturday to some newbie Inclusion Specialists at the city Recreation Center. My son has gone there for childcare and rec (swimming, etc.) and been supported by an inclusion plan. They want me to give the “parents point of view” to the new employees.

Anyhow, I just want to make sure I have a lot of insight. I know my situation and my son’s, but that is a narrow strip in the bigger picture of disabilities and childcare.

Advise away! And remember that you can send Feministe Feedback questions to feministe-at-gmail-dot-com.

26 thoughts on Feministe Feedback: Why is Inclusion of People with Disabilities Important?

  1. National PTA includes local units called Special Needs PTAs (SEPTAs), and they can be formed in any kind of school, including preschools. Contact Scott Brody (sbrody@pta.org) if you’re interested in learning more about how to start a new PTA unit or if you want to connect with a SEPTA to find out what they know that can help you..

    There is also this article that lists a lot of resources for parents with special needs children, and they might be able to give you further information: http://www.pta.org/2742.htm

  3. People with disabilities that are “invisible” are generally assumed to not really be disabled by those who do not know much about their disability. It is often assumed that if you aren’t in a wheelchair, you’re not disabled. If you can walk, you’re not disabled. These obviously ridiculous fallacies are still so prevalent in our society, it is pathetic. As a person who lives with both a physical “invisible” disability (a chronic set of diseases), and a psychiatric “invisible” disability (which is also physical, ie, of the brain), I can attest to the fact that there is much education about disabilities needed in the world today. As the most common type of disability today is a chronic illness, it’s evident many folks are in the dark about the facts.

    Further, being disabled puts people at an obvious disadvantage and having accomodations and purposeful inclusion is merely a way of closing up the gap in equality. Inclusion of every type of person in society is important. I think the reasons for that are pretty obvious, but it boils down to plain old fairness and justice.

  4. I worked an outdoor education camp for a year. While we didn’t often have students with disabilities, the best groups DID have student with disability.

    One group I taught had a student with Down’s syndrome in the class. In the team building class, one exercise in particular showed me how much the students benefited from having the Down’s syndrom student there. Instead of the objective being “complete the activity as soon as we can,” the students focused on having everyone participate. Success, to them, was not based on how quickly the end goal was met. Success was on how far everyone could come.

    Oh, and when it came to horse riding? The student with Down’s syndrom rocked the socks off everyone else. She was a natural.

  5. Jesse,

    Not to contradict what you’ve said or to put down the wonderful lessons that your students have learned, but it is NEVER a good idea to use a PWD to provide a “learning experience”. PWD are people too, and they don’t need to be treated as an afterschool special episode. As a deaf person, I’ve been treated that way often, and it’s very annoying, not to mention demeaning. My life is not a lesson for you, thank you very much.

  6. and from a parent’s point of view, you could apply that towards your talk to Inclusion Specialists. Singling out a child or making it into a special project is not inclusion – it is exclusion – and they should try not to make that mistake. If a problem comes up in the classroom, it needs to be addressed as a rule of general etiquette, not as a specific rule for one person only.

  7. I think it’s always good to point out that because the range of disabilities is so huge, and the many various types of accomodations people need are often things a person (able-bodied or not) would never normally think of themselves off the top of their heads, it is really crucial that organizations actively try to include accomodations – i.e., do research, make a point of brainstorming, etc. Without a real thoughtful attempt to make a place/situation inclusive, it will not be.

    I think people are too often of the opinion that if they just have the right inclusive mentality, everything is fine. Obviously, inclusive mentalities are a step in the right direction, but it also definitely helps to plan things with accomodations in mind as much as possible, and that takes a lot of thought and research.

  8. The most important job of someone trying to include any marginalized individual is defining the social perceptions of their group. If an inclusion specialist treats a PWD as a curiosity the rest of the group will too, if they treat them as a burden (overtly or covertly) their example will be followed, if they treat them as someone “special” (that is, someone to be singled out) then the other children will do the same. Inclusion isn’t about keeping excluded people near to you so that you have a dozen different bubbles in the same room, inclusion is about doing your best to break down the systems and behaviors of exclusion that you perpetuate.

  10. Inclusion is about diversity and equal opportunity. Without the inclusion of PWD they can’t be part of the conversation. You must bring everyone to the table for the “conversation” to take place; otherwise you risk devaluing the (diversity of) abilities of some people. Non-inclusive environments are nothing more than systems setup to keep the status quo, sometimes inadvertently, but mostly not.

  11. This is great stuff, thank you!

    Also — I’m having trouble putting into words the fact that because my son has inclusion services provided (and guaranteed to him by federal law), that I am able to work. Thus, these types of programs have a ripple effect, I think. Childcare in general is so important, but finding good affordable, childcare for a child with a disability is HARD.

    Annaham — I hear you. And I agree. Why wouldn’t everyone be included? I’m lucky because this group I’m going to talk to is by design receptive to the inclusion experience.

  12. Kat – i think it’s definitely important to mention that effect. services and programs for PWDs are much more limited than options available to TAB kids. ensuring that this facility is accessible to your child and other children with disabilities expands the limited options, which can benefit both the child and the family as a whole. PWDs and families with a PWD member are disproportionately likely to live in poverty, which makes it even more important that what i assume is a free or low cost service is accessible to kids with disabilities. your work earns money that, in part, ensures stable housing, adequate nutrition, and medical care for your child – all of which can have serious health impacts. so ensuring your ability to work also can be viewed as a serious benefit for your child.

    good luck!

  13. melaka,

    I apologize for not being clearer. You’re absolutely right; PWD ARE NOT after school specials. As a facilitator my role was to set ground rules for the exercises, set final physical objectives and make sure everyone had a chance to partipate. It was up to the students to complete the exercise and create their own team objectives in the process.

    I would not have done my job correctly if I pointed out your or another student’s disability.

  14. Thank you for doing this work. It needs to be done.

    Our society has gotten past a lot of discrimination. But it’s still got a long way to go. As a person with multiple challenges, most invisible, I deal with a great deal of discrimination and do a tremendous amount of education both on a personal level and even more so with the “professionals” that I have to deal with (i.e. doctors, therapists, etc) It often gets frustrating, because I am fighting for those that come after me, but it doesn’t come back to me. too soon I suppose. So I keep going and I keep teaching.

    But it all starts with the kids. The more we are forced to remain separate, the more we are seen as separate. Separate becomes other. And “other” is not “us”. We become not as real, not as human. And that makes it so much easier to push us aside. And push us around. If our CWD are included (actually included as discussed above) with our CWOD on a regular basis, it will help make it more difficult for us to be simply pushed aside as “less than” And, perhaps more importantly, more difficult for us to accept it.

    Good Luck with your speech. And thank you again.

    Truth Speaks

  15. For people born with disabilities, or who develop them early in life, the social isolation can start almost immediately. Adults don’t know what to say to a family member or friend whose child is disabled, so they often just… stop coming around, or stop calling. The social isolation extends to the whole nuclear family, because of people’s discomfort with disability.

    I understand you’re supposed to be providing a parent’s POV on the subject, so perhaps talking about how society deems children with disabilities incredibly tragic, and thus constantly presents them as being charity cases and craving to be “cured”. This further isolates both the child and the parent(s). Children with disabilities being included as part of so-called mainstream programming is of benefit to both parents and children because it cuts into the social isolation.

    It may be worth bringing to their attention as well that not all parents are currently non-disabled, regardless of their children’s ability status. Offering programs that include children with disabilities in turn makes sending their kids more attractive to parents with disabilities.

    Out of curiosity, did they also ask someone with a disability to talk about inclusion programs?

  16. I am not sure if they have, but I will suggest it.

    One point I am going to make is that if there is a problem of any kind — don’t wait to talk to me. Talk to him! Sometimes, that is a problem. They don’t let him have his own voice. If I get a call at work, my first question is “what did he say when you talked to him?”. And sometimes they have to admit they didn’t talk to him. So I tell them to call me back when they have. And then I talk to him too, but …. shoot…. they would have talked to any other kid his age, but not him.

    He is 13 and I’m trying to slowly cede my advocacy on his behalf to him — it won’t be long before he has to advocate on his own and can choose (or not) to have me with him. I have already started insisting he come to at least the first 20 minutes of his IEP meetings, especially if he is the one who has suggested a change (he asked to have his speech services closed out for instance, and I gave it some thought and knew he made a good choice. We sat down and penned an e-mail together, and then he came to the meeting and he talked about why he wanted that change.)

  17. “…did they also ask someone with a disability to talk about inclusion programs?”
    Would that person be presumed to speak for other PWD? Whose disabilities weren’t remotely similar?

  18. No, they’d speak about inclusion programs and what impact they’d had in that person’s life, the same way that a parent would speak about inclusion programs for children with disabilities and what impact that had had on the parent’s life.

    Being that parents, spouses, and children of people with disabilities are often invited to speak “on their behalf”, or are invited to write op-ed posts about the “experience” of disabled people, it would be nice to see more examples of people with disabilities being invited to speak about their experiences with a program allegedly designed for them.

    While disabilities are all experienced differently, even when one has the same disability, there is a shared experience that would make someone with a different disability more qualified to speak to the experience of inclusion programs than someone who is non-disabled, especially if we’re talking about the experience of inclusion programs in childhood.

    Parents can only speak to one aspect of that.

  19. Anna, that is a really good point. I can only speak to my experience as a parent of my child with his particular disability. I can’t speak on his behalf, although at this phase in his life I am his primary advocate. Any child, as they get older and more independent, needs to take the reins on advocating for themselves and we in turn as parents and a community need to let them. For PWDs this is not always an option and it should be.

    A lot of what I see my son experience is a sort of passive exclusion. The often well-meaning adults in his environment aren’t mean to him, but they also don’t engage him the way they would an NT peer, and that leaves him feeling outcast.

    I’m hoping to convey that message at this training.

  20. IN 1995 WHILE HAVING A 5 WAY BY-PASS SURGURY I HAD TWO STROKES , WITCH LEFT ME UNABLE TO WALK OR TALK I WAS TAKEN TO A REHABILATATION CENTER,WERE I FORCED MYSELF TO DO MORE THAN EXPECTED EVERY DAY,AFTER BEING RELEASED FROM THERE,I WENT HOME TO RECOVER MORE ON MY OWN.WE COULD NOT AFFORD THE COMMUNITY CENTER FEES,UNTIL THEY AGREED TO LET ME JOIN AT SENIOR CITIZEN RATES.I REGAINED ALL MY SPEAKING ABILITY,BUT STILL HAVE A DAMAGED FOOT,BUT I CAN DO EVERYTHING I NEED TO DO. ONLY BECAUSE THE COMMUNITY CENTER LET ME GO THERE EVERY DAY. PLEASE DO ALL YOU CAN DO TO HELP THE DISABLED

  21. I agree with “Truth Speaks” , especially “Our society has gotten past a lot of discrimination. But it’s still got a long way to go”. hereby , wish you good luck

  22. Well, on a purely selfish level, I want everyone in the world contributing to their full ability. Is someone in a wheelchair gonna cure cancer? Maybe! Get them a freaking lower lab bench — I want to live forever. :p

    And as someone with sort-of mental illness(es?), I can say that PWD can contribute a helpful and unique perspective to problems, even little obvious details that everyone else misses. For example, my lab was discussing a recent “attempted suicide” stabbing committed by a doctor, very non-fatal wounds to his torso only, who then took himself to the emergency room and lived. Everyone was puzzled; “he’s a doctor! Shouldn’t he be able to kill himself efficiently?” … but as a person who’s dealt with tons of depression (and a ton of depressed friends and family) I suggested it was *probably* a cry for help (or at least turned into one) rather than a serious attempt to wind up dead, and everyone was like “…ooh that makes sense.”

    And it took the one dark-skinned WOC in my (admittedly very small) class to ask about how melanin levels were regulated when we talked about skin. So we all learned something new that day that we wouldn’t have otherwise. That’s reason enough for me to want to be very inclusive of non-whitemiddleclassablebodiedstraight-yaddayadda people, philanthropy and ethics aside. ^^

  23. Er, to clarify, having dark skin is not a disability. I just sort of kept rolling on the “inclusion” thing…

  24. Thanks to everyone! I included lots of what was said here in my presentation and it was well-received. Your comments helped me expand my message to my personal situation to a broader perspective. And I didn’t faint or anything giving an oral presentation (which was a fear) so that was good, too. 🙂

  25. I don’t understand why anyone feels the need to explain the importance of inclusion with regards to people with disabilities. It’s not about convincing people why persons with disabilities should be included. We shouldn’t have to convince anyone to obey the law. People with disabilities have right to all public services (just like you and I) and the right to be self sufficient(just like you and I) with regards to employers obeying ADA when hiring them…. THERE’S NOTHING TO EXPLAIN, IT’S THE LAW….

  26. This is SO important, although it seems obvious to many. An example, the subway in the SF bay area, BART was sued by a group of blind and other folks because it was quite easy to walk off the platform. BART eventually put a surface different from the rest of the platform, with both a different color, and of a different texture. If BART had consulted a blind or low-vision person and/or included them on a committee when building it, the problem would not have existed.

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