Accessing The College Experience

Photo of a green highway-type sign with white letters reading "College Just Ahead", in front of a partly cloudy sky background

It’s just about college starting time, so I am sharing two very different videos that have me thinking back to when I started college.

The first is an advice video by Robyn Lambird, for disabled people getting ready to go to college:

This is all excellent advice. I'm not even sure I would add anything to Robyn's five points. Anything more would be either general life advice, or the thick weeds of self-advocacy strategy and tactics ... which would really require several more videos. This is a great start for anyone with a disability getting ready to go to college.

The next video I think calls for something like a “Privilege Warning,” because I’m going to talk about accessibility of a very elite and exclusive college experience. You’ll either find the video charming or disgusting, probably based on your view of the relative nature of social privilege and top-dollar private colleges.

This is a video about Freshman Trips at Dartmouth College, which is where I graduated. A friend of my mother’s brought her daughter to visit Dartmouth back in the Spring, and I drove over to have lunch with them. Going back to visit Dartmouth always makes me nostalgic. Dartmouth is really good at doing that, and it’s entirely deliberate. It all starts with those Freshman Trips … a variety of hiking, biking, canoeing, and other outdoor activities organized by the Dartmouth Outing Club. The idea is to initiate, (indoctrinate?), incoming Freshmen to the Dartmouth culture, and bond them as a class, while introducing them to the natural beauty of New Hampshire that surrounds Dartmouth.

My connection to Freshman Trips at Dartmouth is complicated. I signed up to go on a beginner-level hike, which seemed at the time like the only physically feasible option for me. As I have written about before though, I got very sick a few weeks before starting Dartmouth, and so acute illness prevented me from going on a trip. So, I missed this pivotal bonding experience, in a way because of my disabilities, in a way not. I would have missed it still, even if it was Measles or Mono or something like that. However, it seems pretty obvious to me now that the trip might have been a disaster anyway. There were no adaptations planned, and I don’t know what they could have done to accommodate me even if I had asked. I do remember that some arrangements were made for me to join in the final evening’s activities at the Moosilauke Ravine Lodge, so at least some people there knew that being included would be important for me. I don’t recall exactly why I didn’t end up going even to that event, but it was probably health related. As I said, I was dealing with a mix of my underlying disabilities and acute illness nobody could really do anything about. Sometimes, when you’re sick, you’re just plain sick.

Watching this video now, I wonder whether the Freshman Trips at Dartmouth today accommodate students with disabilities. The campus is much more accessible today than it was when I was there in the late ‘80s, so it seems reasonable that there are mechanisms to ensure that the full Freshman Trip experience is accessible to disabled students. But I don’t see any evidence of this in the video. Although Dartmouth is, by some measures, one of the more conservative of the stodgy, elitist Ivy League colleges, the actual, on-campus culture includes a strong interest in social justice. Of course, as we all know, politically progressive cultures don’t always have a clue about disability rights. It's equally possible I would find the current arrangements really impressive, or completely unchanged 31 years later.

I should probably send an email to the Alumni Magazine or something and ask about it. In fact, I am curious now about all sorts of things having to do with disability at Dartmouth. Despite missing out on a few things, my experience as a disabled student at Dartmouth was very positive. As I think I have mentioned in this blog before, at the time, Dartmouth dealt with disability mostly on an ad hoc, accommodative basis. There wasn’t much accessibility and consideration of rights built into the system yet, but the general attitude of the administration and faculty was to be responsive to student’s needs. That fits with the overall culture of Dartmouth. They are very selective about who they admit, but once you’re in, they want you to succeed and will do a lot to see that it happens.

I wonder how much of that has changed, and if it is all for the better. My worry is that there may be more institutionalized supports and recognition of rights, but also more bureaucracy defensiveness surrounding it.

I’m definitely going to try to find out.

Tebow's Proms

Cartoon picture of dancing man and woman dressed for formal party

I’ve seen some chatter lately on the Internet about American Football star Tim Tebow’s charitable project “Night To Shine,” which funds prom events for high school age students with disabilities. They are controversial among what is most likely a small minority of people, most of whom are disabled people themselves.

The interesting thing is that there is an unusually wide gap between how simply and umcomplicatedly “good” the “Night To Shine” program looks to the casual observer, and how instinctively troubling it is for those of us who actually went through high school with disabilities ourselves. What’s the crux of the problem?

In a nutshell, arranging separate proms just for disabled kids validates and enables the barriers that prevent disabled kids from going to their schools’ regular proms. It’s essentially giving up on the idea of social inclusion. I get that to an actual disabled kid, a fun night out might be preferable to sitting at home alone to make a political point. But wouldn’t it be even better to get help and support to be able to go to the prom everyone else is going to?

Why do we need separate proms? And why isn’t the Tim Tebow Foundation asking that question?

I have a suggestion. Next year Mr. Tebow should instead offer to help pay for any prom that takes strong steps to include students with disabilities. You care about disabled kids. You’ve got money and the organizational tools to do ambitious things. Put your name and resources into integration, not segregation.

Note: I wrote about this type of thing last October, too.

Return Of The "Pool Noodle?"

Photo of a child's feet in sneakers standing on a one-step platform with a while cane for the blind out in front

Just short of a year ago, we read a similar story, about an American school district taking away a young blind boy's white cane because they said he used it to threaten harm to someone. They gave him a semi-flexible foam "pool noodle" instead, and shortly afterwards, gave the cane back to him and apologized for confiscating it. Compared to this British girl, that case seemed like more of a real dilemma. One way or another, safety was at least a bit of a reasonable factor. The disability rights consensus was 1. Don't confiscate a disabled person's main tool for adaptation, and 2. Do make sure that young disabled children are trained in how to use these tools safely and appropriately.

The same formula probably should apply for Lily-Grace, or any kid just starting to use a white cane, crutches, or a wheelchair. Nobody is saying she's reckless with the cane, but she's seven years old, and there's a method to using a while cane. You don't automatically know what to do with a cane just because your blind and they had you one.

Both situations underscore how small disability-related problems get out of hand when one or two people with some sort of veto authority get antsy about anything unfamiliar going on in their professional territories. It gets worse when they happen to have a personal preoccupation with certain aspects of disability life. It may sound strange, but there are people who have very firm opinions about the use and abuse of white canes, crutches, ramps and elevators, and wheelchairs ... not to mention service animals. And they absolutely do not see it as ableism in its purest, simplest form. I suspect the officials responsible for both of these crises felt that they were the only ones with the good sense to raise concerns and put the brakes on well-meaning but carelessly permissive policies. Couple that with administrative procedures that handle contentious issues too slowly and deliberately, and you get, I think, maybe 75% of the news stories about ableism that make it into the mainstream press.

It's so galling when it is happening, that it's easy to froget that most of these situations are resolved more or less properly in the end. Blind kids get to use their white canes in school. Customers can, usually, enter coffee shops with service animals without it making the local news. Most people don't regard ramps and elevators as expensive luxuries, at least once they are fully installed. But in the meantime, massive time is wasted futzing around with pointless deliberations when the eventual outcome is rarely ever in real doubt. This is where a bit of autocracy can actually be a good thing. We need more school principals and headmasters who are willing to say, "I appreciate your concern, but unless there's an actual problem, blind students will be able to use white canes ... or whatever they need ... in our school. That's the way it's going to be."


Inspiration Porn: High School Gestures

Silhouette illustration of a young man and woman dancing at a formal dance
I am still working on a sort of master post on Inspiration Porn, but I want to take another detour to talk about a subset of this loosely defined phenomenon. I'll call it High School Gestures, referring to three practices that have become popular in American high schools and a familiar trope in "feel good" media:

2. Organizing and hosting "special" prom events, specifically for disabled students.

3. Allowing a disabled student to "run a play" with a sports team.

Three key factors make these practices a type of Inspiration Porn:

1. They are all intended to be “good deeds” for people assumed to be stigmatized and unable to make satisfying social lives for themselves.

2. Media coverage of these events almost always focuses on the kindness of the organizers, relatively little on the disabled individuals these events are supposed to benefit, and not at all on the stigmas and barriers disabled students face every day in their effort to participate in school social life.

3. The events are often further interpreted as encouraging signs that "the kids today" may not be going to Hell after all ... the premise being that on every other day it seems like they are, an unfair and insulting idea in itself.

Labeling these kinds of events Inspiration Porn obviously indicates that I have problems with them, and I do. They are usually well meaning, but contrived and, in a sense, fake. I worry that later in life, some of these disabled youth will look back on these “feel good” events and and cringe at how patronizing they were, and wonder how they allowed themselves to be treated as objects of pity and charity. No matter what the specifics, these events are almost always reported in the same sentimental way, so that even when a specific event is really sincere, it still comes off as weepy Inspiration Porn. The worst thing, in a way, is that these are usually “one off” gestures that benefit one especially loved disabled person, while most disabled kids are unaffected.

Let’s be clear. An unstated premise of these gestures is that “normal” high school social rituals are inherently exclusive and off-limits to most disabled students. That is the problem, and these flashy gestures don’t do much to change the situation. It’s like giving a box of extra-tasty chocolates, just once, to starving person, instead of what they need, which is a reliable diet of nutritious food.

In addition, a lot of disabled people themselves find these kinds of practices truly vile and offensive, in a very personal way. And I think it’s important to emphasize that this feeling is real, not intellectualized or theoretical, or deployed merely for rhetorical purposes. And no, it doesnt matter that the intentions are good. We feel it like a gut punch.

On the other hand, I have started thinking that the acts themselves aren’t always so terrible; it’s the way they are reported that makes us gag. In a couple of cases about prom court elections, it seemed like the students sincerely voted for people they genuinely liked, almost without reference to their disability. It's just that the media covered it like it was a charitable act. Still, one or two isolated examples just don’t go far enough when the majority of disabled students are entirely left out of extracurricular activities and social life.

Instead, I would prefer schools to discourage these types of grand, benevolent gestures, and instead take up the long-term and less immediately gratifying job of removing barriers to a full social life for all disabled students.

How? Here are some ideas:

1. Schools should support a wider variety of extracurricular activities, besides the prom and the the most popular sports programs. "Schools should support" means school district taxpayers should demand and agree to pay for more diverse, robust social options that appeal to all kinds of students, including those with disabilities.

2. Schools should create clubs and organizations that are associated with the top sports programs, but serve peripheral support functions and can accommodate non-athletic participants. It's unrealistic to think that chess club, theater companies, and community service groups are ever going to be as popular as football and basketball, so let's create and recognize some real support roles that disabled students ... and other non-athletic students … can play.

3. Make it absolutely clear that all students … including those who don't have dates and just want to go and have fun … are welcomed to attend all of the proms, formals, and other social events. The long term goal here might be to permanently de-emphasize the "coupling up" aspect. Also, it would help to downplay the most expensive aspects, like tuxes, gowns, and limos. Don't ban them, but don't glorify them.

4. Instead of charitably giving awards and honors to disabled people who would probably not qualify under ordinary circumstances, create a wider variety of awards and honors that are honest and real, and which disabled students (and others) can more frequently earn without anyone having to make a “special” effort.

One argument against these suggestions might be that they shortchange students on learning valuable lessons about kindness and generosity. For one thing, that's like saying that we need people to be in poverty so that everyone else can learn to be generous. I would also counter that there are much more important lessons to learn about respecting and including all kinds of people and normalizing those values, rather than treating ordinary decency as some kind special gift that privileged people occasionally bestow on those deemed “less fortunate.”

In short, a little less “Make-A-Wish” and a lot more commitment to deep integration and equality. That’s what we should be shooting for. It’s harder to accomplish, but the long term benefits are far greater than the fleeting results of one or two big, short-term gestures per year. And although wholesale culture change sounds like a near-impossible task, these specific steps in that direction are eminently achievable.

We have to insist on it, not just for our disabled students, but for all of them.


Shared Abilities Article

Shared Abilities logo. Abstract illustration of a person holding both hands up in the air.
Shared Abilities just posted what I hope will be a series of items where parents of kids with disabilities “Ask Andrew” questions about what it is like to grow up from being a disabled child into a disabled adult. Obviously, I have mainly my own experience to draw from, and it’s not like everything went exactly the way it’s supposed to for me. But I figure the failures and shortcomings taught me just as much as the victories.


Video Of The Day

TED Talks are meant to showcase ground-breaking, innovative, unorthodox people and ideas. This is pretty basic, entry-level disability stuff.

I dont meant that as an insult to Torrie Dunlap. She does a very good job of explaining accessibility, adaptation, inclusion, and the different models of thinking about disability. I especially want special needs parents to see this. It's a very kind but forceful pushback against the "special" everything impulse.

Still, it is frustrating that these simple, quite standard and established ideas about disability are apparently still new enough to mainstream ears to be the subject of a TED Talk. I guess its good, then, that even though the whole TED Talk phenomenon can get a little irritating, it has given a valuable outlet to disability leaders and role models like Maysoon Zayid, the late Stella Young, and others.

I just wonder how many more decades it will be before ideas like this provoke nods and yawns instead of applause.


Newbie FAQs: Advice For Children And Youth With Disabilities

FAQs in big three dimensional blue letters, with a computer mouse
What Do Children And Youth With Disabilities Need To Know About Disability?

There are thousands of ways to answer this question. Most of them are based on a few core ideas about disability. These are ideas that don’t always come naturally to young people with disabilities or their parents, which is why I think it’s a good idea to spell them out.

- Physical access and accommodations to your disability aren’t personal favors or privileges. They are rights you have as a citizen. No matter what your disability is, or how “severe” it is, you have the right to go everywhere non-disabled people go, and do everything non-disabled people do when they get there.

- You may need help from other people all of your life, but that doesn’t mean you have to make people like you all the time. It’s good to be kind, polite, and cheerful, but you can also be angry sometimes, sad sometimes, grumpy sometimes. It’s also okay to decide that you don’t like someone. You won’t be abandoned just because you made a caregiver angry. You are not a burden. You are a person, and you don’t have to “earn” your care by being a perfect angel and never complaining.

- It’s good to make careful decisions about the things you want to do, and how you use the energy and resources you have. But don’t give up on exciting opportunities because you think might need help and you don’t want to be a bother.

- You don’t have to be able to do everything by yourself, exactly the way other people do things, to be independent and successful. It’s okay to do things differently, and it’s okay to get help. Independence is about making your own decisions and organizing your own life, not being able to walk or tie your shoes.

- There are literally millions of people with disabilities all over the world who have an idea of what it’s like having your disability. Don’t turn away from others with disabilities because disability makes you sad, or because you think it will keep you from fitting in and being more “normal”. Other disabled people can be a great source of advice, friendship, and support you can’t really get from anyone else.

Incidentally, these are pretty important ideas for adults new to disabilities as well.

Does anyone have other ideas? Share them in the comments!


Education, Segregation, Isolation

Stick figure illustration of person with graduation cap sitting on top of a stack of books
Mike Krings, KU News Service, The University of Kansas - February 10, 2015

Well, bravo. Seriously. Its rare to see such an unequivocal statement in favor of inclusion.

Im not knowledgeable enough to comment on the details of what these professors are proposing. I do want to note a few things:

- Its great to see full inclusion strongly endorsed without the usual caveats and reservations.

- It blew my mind a little seeing the Education of All Handicapped Children Act of 1975, (now called the Individuals with Disabilities Education Act or IDEA), described as a law to segregate kids with disabilities, as if that was its purpose. I always understood the law to have been intended to provide education to kids with disabilities that previously had no legal guarantee of it in any form. I think what they are saying here is that the law ended up increasing segregation by turning education of disabled kids into a speciality.

- Calling Special Education “a place rather than a system of supports is spot-on. That is what it has been for decades. Most schools it still treat Special Education that way. 

- Its a broken record in the disability activist community, but bears repeating … How can we still be talking about inclusion as if it’s a new idea we might, maybe be ready for, when it has been a core principle of federal Special Education law since at least the early 90’s? 

- Reading "Special Needs Parent" blogs, Im worried that segregation may be coming back into style among parents of kids with disabilities. It used to be the more apathetic or intimidated families that went along with keeping disabled kids in separate classrooms. Now we have a lot more parents choosing either homeschooling or private schools specializing in disabled kids. It seems like a rejection of public schools, and a vote of no-confidence for Special Education. Yet, the results tend to be just as segregated and isolating as Special Ed at its worst.

- Broadly speaking, I think public education in the U.S. is unfairly maligned. However, Special Education does seem to be a very special” subculture within public education, where there are plenty of great people entangled in an outdated, bureaucratized system that is defensive and resistant to change. Special Education is in reality what all of education sometimes appears to be.

Advocacy Or Fundraising ... Demanding Or Asking?

Austin High School, Austin TX
(Via the Disability Visibility Project Facebook Page)

I thought about this story a lot yesterday ... not about the honored student-produced video, but rather what the video was about.

Why didn’t Archer Hadley, his parents, and his classmates petition the School Board to install automatic doors as a basic accessibility feature, to comply with the Americans with Disabilities Act?

Maybe they did. Maybe the fundraiser was a fall-back strategy after advocacy failed. Personally, I doubt advocacy was ever really considered. It seems like everyone involved ether consciously or unconsciously kept this whole matter squarely in the realm of a personal quest … inspiring, maybe educational, certainly not confrontational. It happens a lot.

Why do non-trivial numbers of smart, energetic disabled people like Archer choose to address systemic barriers with fundraising and “awareness” campaigns instead of advocacy? Sometimes they are deliberately diverted this way by people in power who would find an advocacy campaign embarrassing, awkward, and of course expensive. What interest me more are the cultural and emotional reasons. I can’t read Arthur’s mind, but I have some thoughts of my own about why things go this way so often:

- To some people, advocacy is energizing, but for others, it seems rude, ridiculous, or scary. For some people, fundraising and game-ish “events” for a cause are fun, familiar, and sociable, while serving a useful purpose. For others, these activities feel either like begging, or, conversely, like an excuse for well-off people to have a party. In other words, advocacy and fundraising come with cultural associations, and appeal in different ways to people with different personality types. I get the feeling that Archer comes from a culture that disapproves of public advocacy, while praising fundraising and awareness events.

- A lot of people can’t imagine solving a problem through legal or political avenues. Not just because they are intimidated, but also because changing “the system” seems impossible, and the efforts to do so feel futile. Getting your family, friends, and neighbors mobilized to raise a specific amount of money, on the other hand, is at least a lot simpler, and the results are more likely to be exactly what you wanted them to be, since you call the shots and there’s no need for negotiations or compromise. It’s why Bill Gates funds a charity to solve the worlds problems, instead of running for office. On a much smaller scale it may be why Archer saw a problem affecting himself personally, and chose a more “accessible”, person-to-person approach instead of trying to navigate a maze of bureaucracy, mostly likely having to settle for one only automatic door, or maybe reduced opening force on all the doors ... better maybe, but not best.

- I think a lot of teenagers with disabilities as significant as Archer's have a genuinely hard time fully believing deep inside that they have the “right” to full access and equal opportunity. I’m not suggesting their self-esteem is in the dumps … though for some it may be. I’m saying that a teen with so many very obvious physical impairments may well feel that being in everyone else’s debt and relying on kindness and generosity is just part of the deal. I felt that way when I was Archer's age. At the time I would have said it was just common sense, that someone “like me” couldn’t realistically expect everything to be open to me. Which is not to say that I didn’t want things to be better. Just that I couldn’t conceive of presenting the really big improvements as anything but humble requests.

How we choose to deal with the problems and barriers of disability says a lot about our culture, our personalities, and where we are in our journey with disability.

(Note: I originally have the young man's name as Arthur, which was a misread on my part.)



More Thoughts On Education

3-D stick figure of person with graduation cap, seated on top of a stack of books

As I think back over all of the interactions I have had with disabled students and their families, I realize that most of the complaints and traumas the students, themselves talked about were about how they were treated by people … teachers, counselors, and fellow students … and relatively little about the curriculum itself being too hard. I mean, I’m sure that most of them also experienced a lot of frustration over the content, too, but most of even those complaints were about botched or denied accommodations, not about the material being “above” their cognitive ability.

Quite a few parents, and a lot of teachers, worried about whether it was cruel to hold more disabled students to “higher standards”. There was this very prevalent idea that it was somehow self-evident that some unspecified percentage of Special Education students were simply incapable of getting a regular diploma … and the percentage was aways inching upward.

I almost never heard students, themselves, complain about higher standards. One might argue that perhaps they didn’t have the vocabulary or conceptual understanding to make complaints that specific, but in my experience they had little trouble being specific about their other complaints.

Also, I can’t think of a single disabled student who ended up worse off or more unhappy because they took more tests or were more fully integrated in more demanding classes. But I can think of scores of kids and young adults I met who were definitely worse off than they needed to be, in part because teachers, counselors, and families thought school should be “easier” for them.

This is all anecdotal of course, based only on my personal memories which may also be faulty. Still the pattern is striking.

So although I’m still ambivalent about stuff like “high stakes” testing, and I don't necessarily trust schools to make good decisions about accommodations, I generally feel an instinct to stick up for more rigor, not less, in education of kids with disabilities.