Rebuilding what was built incorrectly

Most of our social infrastructure was built incorrectly. It was built on the assumption that everyone is basically physically and cognitively similar, and that people who aren’t need to go away and be someone else’s problem.

People with disabilities have been treated as disposable. Children have been kept out of school; adults have been excluded from higher education. People have been institutionalized, and many are still stuck in institutions. 

People live without freedom, and are kept from their communities. People are forced to stay unemployed rather than supported in finding work that they can do. Disabled people have been harmed in any number of ways.

It has always been wrong to exclude people with disabilities like this, and in recent years, more people have come to understand that it is wrong. Accessibility and inclusion are on the table much more often than they used to be (in significant part, because the disability rights community has insisted that they be there.) 

Part of what we have to do is be willing to be inclusive, and be willing to change things for the sake of access. That’s necessary — and it’s also not enough. There are a lot of access needs that we flat-out don’t know how to meet right now. For some people, nothing we currently know how to do is good enough.
In order to build a more accessible and inclusive culture, we’re going to have to create things that don’t currently exist. We need better infrastructure and support. We need better technology. We need more resources, and more understanding that funding disability needs to be a priority. We need research and development, we need to learn a lot of things that we don’t currently know. 

The only way to get better at accessibility and inclusion is to start from where we are, and to commit to getting better at it. We can’t wait to be ready; we will never be ready. What we can do is understand that the people who are still being excluded matter, and keep building the things that need to exist.

point of autism testing?







Anonymous said to realsocialskills:

What’s the advantage of getting formally tested for Autism? My Psychologist pretty much just offhand diagnosed me with Aspergers, though I’ve know I had AS for longer than that. Anyway, since my family and I already know, is there any reason I should formally test for it?

realsocialskills said:

I can’t tell you whether it’s a good idea for you or not.

There are several reasons that I think it may be worth considering.

One is that external validation might matter to you more than you think it does. I knew I was autistic before I was diagnosed; diagnosis still mattered to me a lot more than I expected it to matter.

One way is that it can matter is in your relationships with other people. If you want to talk about being autistic, being professionally diagnosed is likely to be helpful. That definitely made a big difference for me.

Another way that autism testing can be helpful is that it can involve testing for other things as well. That’s worthwhile partly because it’s possible that another diagnosis fits you better than autism (that happens sometimes), and also because it’s not at all uncommon for autistic people to have additional cognitive or physical issues.

Testing can give you information about cognitive and neurological strengths and weaknesses beyond a one-line diagnosis. It can also tell you about other conditions you might have. For instance, testing can sometimes tell you:

  • If you also have ADHD
  • If you’re having motor skills problems, and what kind
  • Whether your memory is typical
  • Whether you’re having reading comprehension problems
  • And various other things potentially worth knowing

All of that can be overlooked if you’re doing ok in school or if people are already attributing everything to one diagnosis. It’s good to know where you stand and what your cognitive strengths and weaknesses are. Testing isn’t always helpful for that kind of thing, but it definitely can be sometimes.

Testing can help you to get accommodations. For instance, if you have difficulty with handwriting and your testing documents that, it can get you the legal right to use a computer for writing tasks and tests in school and university. That applies to a lot of other things too. If there are supports or accommodations that you need and aren’t getting, testing might help you to get them.

This is also true if you’re in high school now and planning to go to college soon, even if all your support needs are being met in high school without documentation. You can’t assume that will continue to be the case in college without documentation – they may well require it, and it will be easier to get what you need if you already have proof.

One thing to consider if you are under 18 (or even under 21), is that diagnosis is often taken more seriously if you were diagnosed as a minor. This can affect access to services and support if you turn out to need help later in life. (It won’t necessarily make you eligible for help even if you really need it, but it does make it somewhat more likely.)

Formal diagnosis also can sometimes open up the possibility of trying psychiatric medication to manage some symptoms. This can also be a downside to diagnosis if it might mean that someone will make you take medication you don’t want to take. Some medication can be really helpful for some people; it can be a really bad idea for other people.

Another downside to consider is that having a diagnosis closes off some options and complicates others. For instance, autism, ADHD, and psychiatric conditions are disqualifying for US military service, even in noncombatant roles. Some other jobs or programs you might want to apply to might ask if you have any disabilities or mental health conditions (sometimes this is illegal; sometimes it isn’t). If you have a diagnosis, you will have to either lie or disclose. That can complicate some things.

Another downside is that getting diagnosed with autism might result in people trying to make you go to behavior therapy or social skills groups. If you’re an adult, it will probably be reasonably easy to avoid doing this. If you’re a minor, people might be somewhat more likely to succeed in making you go to bad therapy. (Although that might happen anyway even without a diagnosis.)

It also might become harder to get doctors to take physical symptoms seriously. Sometimes diagnostic overshadowing means that everything gets attributed to autism even when it isn’t.

That said, I think all and all, the advantages to diagnosis outweigh the disadvantages for most people, particularly most younger people.

tl;dr Overall, I think that if you’re autistic or suspect you might be, pursuing formal diagnosis is usually a good idea. That said, it’s a very personal choice and your milage may vary. Scroll up for some reasoning.

slashmarks said:

It also may prevent you from immigrating to a lot of countries (for instance, Canada), may result in you having custody of your children taken away as an adult, and in some states can require you to jump through additional hoops to get a driver’s license, like requiring you to find a doctor who states that your autism doesn’t make it unsafe for you to learn to drive.

arobotstolemyuterus said:

It also has the potential for you to be declared incompetent and in need of a guardian as an adult (especially if you’re under 18 and it can be done before you’ve had the experience of being an adult and responsible for yourself in the eyes of the law, but it’s not unheard of for parents to get a competency hearing even if you are over 18). 

I mean, ultimately that depends upon your family, but it’s worth considering if your family will realize that this diagnosis doesn’t change who you are or if they have deeply entrenched ableist beliefs that will lead them to pursuing that sort of thing. I’m not trying to scare anyone, but it’s worth thinking about your family’s attitudes toward autism and the way they treat you now before pursuing a formal diagnosis.

arobotstolemyuterus said:

I should clarify what I mean here, because I don’t want to scare anyone. If your parents are abusive, or if your relationship is unhealthy because they try to foster codependence, it is possible that they will use an autism diagnosis to continue to exert control over your life and the decisions that your make, and there are formal legal measures that can help them do this. (FWIW, if you’re doing fine in school and have lived without a diagnosis for a long time, if this were to come up, there would be ample evidence that you could present in your defense.) 

If your family holds the ableist belief that people with autism by definition will never be real adults capable of making decisions for themselves and they are unlikely to change that view in the face of new information from a doctor, there could also be a problem. OP says that their family already knows, so they’ll probably be okay with this, but if anyone out there reading this is also considering a formal diagnosis, this is one of the risks worth considering.

 I think, in most cases, your family is going to realize that you’re still you, the diagnosis didn’t make you autistic, and while you may have to combat some misinformation, it’s unlikely that it will change your relationship with your family too much. But if your relationship with your family is unhealthy (because of their behavior) a diagnosis could be ammunition for them, and it’s something that needs to be considered before seeking a diagnosis.

realsocialskills said:

Important additions. Thank you.

dendriforming said:

Even if your parents wouldn’t think of it by themselves, the evaluator may attempt to persuade them that you should be put under guardianship or into an institutional setting. They may do this by lying about the laws. My evaluator told my parents and me that simply having an autism diagnosis made me legally incompetent to appoint a power of attorney, and that being under guardianship was the only way anyone in my family could ever make medical decisions on my behalf if I became incapacitated.

If your parents are going to be present at your evaluation and seem willing to accept misinformation like that uncritically, you may want to be more cautious about getting a diagnosis.

Illegal doesn't mean uncommon

So, sometimes when I talk about disability or racial or sexist or religious discrimination, people will be like “but isn’t that illegal?!”.

If you’re inclined to react that way, consider this list of things that are also illegal in the United States:

  • downloading copyrighted movies without paying
  • uploading someone else’s copyrighted content to YouTube
  • Scanning a whole book and putting it on Blackboard for your students to download 
  • smoking marijuana
  • shoplifting

You may have done one of these things in the past week, and you almost certainly know someone who did at least one of those things within the past week.

Illegal discrimination is like that too. It is against the law, but people don’t always follow the law. And, while serious consequences are sometimes imposed, a lot of people get away with breaking those laws without facing any serious penalty.

People who are discriminated against know this. You should keep that in mind when you talk to them about discrimination and the law.

When you don't hide

Some people are bullies. 

Many bullies target people who have apparent stigmatized characteristics.

If you choose to stop hiding a stigmatized part of who you are, some people will be actively mean to you who weren’t mean before.

For example:

  • If you are gay, coming out will make some homophobic bullies more interested in hurting you
  • If you are autistic, stimming in public will make some ableist bullies more interested in hurting you
  • If you wear clothing associated with a stigmatized religion, some bigoted bullies will be more interested in hurting you

This is not your fault, but some people will blame you. Some people will tell you that you brought it on yourself by being visible. You didn’t. Bullying happens because mean people choose to hurt others. 

You were already getting hurt by bullies, because hiding hurts too. The way bullies hurt you when you are more visible is a different kind of hurt. Both are equally real.

Some people in some situation find hiding more bearable. Some people in some situations find being visible more bearable. Both are valid. It’s a personal choice. And the consequences are never your fault.









SRS: Yellow

tw: ableism, staring at disabled people


I look contagious but I’m not. How do I tell people this? How do I get them to stop staring and stop being afraid they’ll catch my uncatchable condition?
realsocialskills said:
I don’t know, unfortunately. Do any of y’all have strategies for dealing with this?

secretsofthedisabled said:

My answer even now is cover up. That’s all I can do. I wish there was a better solution, sorry. If anyone has one, I’d love it.

(I’m also chiming in that wearing a t-shirt with my condition on it is highly uncomfortable and just not feasible.)

realsocialskills said:

What do you mean by cover up? Do you mean like, wearing a lot of clothing? Or something else?

secretsofthedisabled said

For example, if the mark is on your neck, wear high collars/a scarf. On your leg, wear pants. On your arm, wear sleeves/an armband. It sucks to do this when you’re really hot, but I chose to instead of being stared at. (You may choose not to, and that’s fine, of course.)

Depending on what type of mark it is, and how sensitive you are, you may be able to use make-up.

slightmayhem said:

people can judge you as “looking contagious” from other chronic disabling conditions besides skin conditions.  CF, COPD or asthma for example can cause a chronic cough that might appear like pneumonia or another contagious cough.  Anxiety can manifest in chronic itching or skin picking which could be judged as head lice, etc.

Sometimes, it’s safer to lie about these conditions than to tell the truth and disclose (for example, if you are afraid of being outed at work, or if you are afraid of social backlash from a more chronic condition.) 

Or simply stating “it’s not contagious” will often work. 

dendriforming said:


I wish “it’s not contagious” worked more reliably, though. I have CF, and I disclose to more people than I probably should, because a lot of people won’t stop pushing after I try that.

secretsofthedisabled said:

Both of you have excellent points. By the way, has “something’s caught in my throat, no biggie” worked for any chronic coughers?

tser said:

“Something’s caught in my throat,” wouldn’t work for my kind of cough. It’s huge, gagging, doubling me over for minutes on end, and has often ended with me throwing up in public. (Or wetting my pants. Yes I am admitting this in public on tumblr. Sorry for the TMI, but these are the realities people with disabilities face.)

In addition, so many times no one says anything, they just glare, or move away with a look of disgust, so I don’t feel like I can say anything.

This is something I’m dealing with a lot lately. Most people in the studio know it’s chronic and not contagious, but there’s one guy who looks at me, very pointedly, EVERY TIME I start coughing like, “So rude, why did you come to the studio SICK,” and “Ewwww.” And I always get THE LOOK on the bus. 

I get constant commentary like, “Summer cold?” “Do you have the flu?” along with people moving away, avoiding me like I have the plague, etc. I mean, I understand. Because of the chronic illness, I can’t afford to get Regular Sick myself, it could make me really really sick and end up in the hospital, so I am very careful to wash my hands, avoid people who are ill, and so on. I understand that no one ever wants to get sick, regardless of their general health status. I also understand people have specific phobias and OCD and similar disorders themselves that would make my cough terrifying to them.

But being ostracized all the time sucks. 

I had one clerk in Game Stop ask if I was turning into a zombie. I said no, it was a chronic condition, not contagious. He followed up with, “Okay. Well, are you going to bite me?” I said, “No, it doesn’t make me do that.” I know he was covering his fear with humor, but I felt humiliated. 

Not everyone assumes contagion, though sometimes it’s kind of amusing. I was resting this weekend on my walker at the side of the sidewalk, trying not to hack up a lung, and an eclectically dressed very loud woman, who had been swearing at various business people for not providing her with a staple gun, duct tape, or safety pins (seriously, she was ANGRY) as they walked by, suddenly stopped and said to me,


I was like, “Wuh—*wheeze*-whha?”

“Vitamin C! Seriously, it’s an AUTOIMMUNE DISORDER. I should know. I had MS, I was in a wheelchair. VITAMIN C!”

I coughed and blinked and she yelled, “FEEL BETTER SISTER!” and darted across the road.

Well, I had consumed a cocktail of Airborne and Emergen-C that morning and guess what, I don’t have MS, so obviously it’s working. /sarcasm *lmao* 

techno4tomcats said:

People far too often mistake my slurred speech and poor motor control as drunkenness and it has gotten me into trouble a few times. (eg: someone calling the police because I was drunk and disorderly when in fact I have having an absence seizure) One time I was pinned out and shouted at which triggered a larger seizure from stress and panic. Was only when I started full out convulsing I was let go without being charged but I was yelled at and generally felt less than human.

I dont have any way of downplaying or fronting this, except having someone close by to assist me/reassure people I’m sick not stoned off my face.

I now have social anxiety at being alone in public spaces and i dont know how to overcome it. :/

"You should make a complaint!"

So, I’ve noticed this pattern:

  • Someone will describe some act of discrimination or social violence
  • And then very well-meaning people will weigh in and say things like
  • “They can’t treat people that way!”
  • “Wow, you should really report that!”

Reporting incidents of discrimination can be a good thing, and sometimes it goes somewhere. But, hearing this well-intentioned advice can actually be really frustrating, for a number of reasons:

The thing about being a marginalized person is that discrimination is a routine experience, not an occasional outrage:

  • Things that sound like aberrations to folks who are usually socially valued enough to be treated well most of the time are daily life for a lot of marginalized people
  • If we filed a formal complaint every time we experienced this, we’d have no time or energy for anything else
  • And sometimes, we want to get on with our lives and do things other than fight discrimination
  • Which means that, sometimes, when we talk about discrimination, we’re not asking for advice on how to make it go away; sometimes we’re accepting that we’re not going to be able to make it go away this time
  • And it needs to be ok to disagree about the right way to proceed

Also, sometimes complaints don’t actually help:

  • When the bad thing is the rule rather than the exception, it’s unlikely that anyone will care.
  • When the offender is much more socially valued than the victim, it’s likely that no one will care
  • People who complain frequently are generally seen as problem whiners, even if they are entirely justified in every complaint they make

Complaints are a good idea sometimes. But complaining is a very personal decision. Understand the costs and risks of complaining. Do not pressure a marginalized person to make a complaint in order to make yourself feel better about the state of the world. Do offer to support them if they want to do so.



I look contagious but I’m not. How do I tell people this? How do I get them to stop staring and stop being afraid they’ll catch my uncatchable condition?
realsocialskills said:
I don’t know, unfortunately. Do any of y’all have strategies for dealing with this?

dendriforming said:

I *wish* I did.

I do have a response to the only strategy offered thus far: “Embarrassing as it might be, the best I can come up with is getting an t-shirt/sweatshirt printed up that says something like “I see you looking at me. I can’t blame you for I am awesome. I deal with (medical name) every day, and I am strong.”

If the condition is a) possibly life-threatening, and b) relatively well-known, this isn’t a good solution. I’m in a similar position to anonymous. I do not want my legal name publicly associated with my condition (because I want to do bizarre things like get hired), which would almost certainly happen if I made a habit of wearing a shirt announcing it.

(Edited, because I am not, in fact, in a similar person to anonymous. I hope neither of us are inside a person at all!)

Being aware of privilege only helps if you do something

Talking about how privileged you are and how much you acknowledge your privilege doesn’t do much, on its own.

It has to actually change what you do.

It can actually make things worse, if all you do is mention it.

Because then the implication is “yeah, I know I’m privileged and have all kinds of unwarranted power over others, but I don’t really care and it’s not going to change what I do. Please to be praising me for noticing this. I’m pretty great.”

And people you have power over can come under a lot of pressure to give you the praise you want, and to help you feel ok about the discrimination you participate in. Don’t do this to people.

When you have privilege, you have obligations that go along with it. You have unwarranted power that you can’t renounce, and the obligation to learn what to do with it. If you’re not willing to think about your power and examine what you do with it, you’re not going to be able to avoid abusing it.

There are any number of other implications too. And there are things it’s not ok to participate in even if it would benefit you, and even if it’s hard-to-impossible to get those things otherwise.

Don’t expect noticing and naming your privilege categories to be enough.