Letter to My Representatives on Graham-Cassidy

Graham-Cassidy is a Medicaid abolition bill. It destroys Medicaid as we know it. It cuts up the safety net into 50 pieces and distributes those shreds to the states. The tatters get smaller and smaller each year until there is nothing left. Nothing left for my children or my grandchildren. Nothing.

Capping Medicaid hurts children with disabilities (such as my own), seniors, Medicaid expansion states, and even victims of natural disasters such as those affected by Harvey in our very own state. What does this preoccupation with destroying Medicaid have to do with stabilizing insurance markets?

This bill upends the bipartisan progress of the past couple weeks. The ACA should be stabilized with a transparent process through regular order. Join the process led by Senators Alexander and Murray. Reject Graham-Cassidy if it comes to a vote.

Letter to My Representatives on HR 620, the ADA Education and Reform Act

I am writing in opposition to HR620, the ADA Education and Reform Act of 2017. HR620 further shifts the burden of compliance from businesses to disabled people. We disabled folks are expected to be civil rights lawyers laboriously advancing the public interest, whereas businesses and even public education are excused again and again for thoughtless non-compliance.

The ADA has been the law of the land for three decades, yet most businesses are still inaccessible. Even those that claim accessibility have done a half-assed job. They fail to meet the lowest bars of empathy and compassion. There is absolutely no excuse for this. None. Accessibility is not that hard. After 30 years, those still running inaccessible businesses do not deserve any more time or benefit of the doubt. Hold them accountable, and stop putting legal obstacles in the way of disabled folks trying to create a more inclusive society. We face enough obstacles at businesses and public spaces that have decided 20% of the population doesn’t matter.

My money and time are where my mouth is. Over the past twelve years, my company has grown from four to over six hundred people. We are committed to accessibility in our products and facilities. Thoughtful, accessible design benefits our employees and our customers. We should be designing for real life instead of excusing exclusion. Everyone doing business is responsible for doing so inclusively.

The social model of disability is essential knowledge for anyone providing goods and services to other people. This is basic business ethics. HR620 is ethical erosion in an environment of already poor business ethics. This is a bad signal to business owners. We’ve had decades to get our act together and have largely failed to do so.

The politics of resentment have turned the ADA into a means of vilifying marginalized people instead of promoting the accessibility that has brought us the biological pluralism of curb cuts, family bathrooms, and accessible public transportation. HR620 is more resentment. Oppose it. Instead, embrace the social model for both minds and bodies. It is good for business and society. An accessible society is more productive, resilient, joyful, and humane. The investments required of each business are trivial compared to the benefits.

The Segregation of Special

The word “special” is used to sugar-coat segregation and societal exclusion – and its continued use in our language, education systems, media etc serves to maintain those increasingly antiquated “special” concepts that line the path to a life of exclusion and low expectations.

Source: “He ain’t special, he’s my brother” – Time to ditch the phrase “special needs” – Starting With Julius

This piece speaks to my experience as a neurodivergent father with neurodivergent kids. “Special” is non-inclusive, discriminatory language. It is a deficit and medical model euphemism that excuses segregation and exclusion.

Use instead the inclusive language of neurodiversity & the social model of disability. Use the power of identity first language to connect disabled kids with an identity and tribe. With identity first pride and a social model tribe at their backs, kids can better develop voice, agency, and the tools of self-advocacy.

“Special” is the language of patients captive to a disability industrial complex. Identity first is the language of agents. By replacing “special” with social model language, we can begin the transformation from patient to agent. Encouraging and developing agency and self-advocacy is one of our most important jobs as parents, educators, doctors, coaches, and therapists.

Segregation never works. Time now for social model inclusion. Our needs are human needs, not special needs. Language matters. We have a moral imperative to connect with the communities we serve and use the language they prefer.

Although human diversity, the social model of disability and inclusion as human rights framework concepts are developing traction, for much of society the “special story” still goes like this:

A child with “special needs” catches the “special bus” to receive “special assistance” in a “special school” from “special education teachers” to prepare them for a “special” future living in a “special home” and working in a “special workshop”.

Does that sound “special” to you?

The word “special” is used to sugar-coat segregation and societal exclusion – and its continued use in our language, education systems, media etc serves to maintain those increasingly antiquated “special” concepts that line the path to a life of exclusion and low expectations.

The logic of the connection between “special needs” and “special segregated places” is very strong – it doesn’t need reinforcement – it needs to be broken.

Further, the “special needs” label sets up the medical “care” model to disability rather than the social inclusion model of disability. It narrows and medicalises society’s response to the person by suggesting that the focus should be on “treating” their “special needs”, rather than on the person’s environment responding to and accommodating the person – including them for the individual that they are.

There is another insidious but serious consequence of being labelled (as having or being) “special needs”.  The label carries with it the implication that a person with “special needs” can only have their needs met by “special” help or “specially-trained” people – by “specialists”.  That implication is particularly powerful and damaging in our mainstream schooling systems – it is a barrier to mainstream schools, administrators and teachers feeling responsible, empowered or skilled to embrace and practice inclusive education in regular classrooms, and accordingly perpetuates attitudinal resistance to realising the human right to inclusive education under Article 24 of the Convention on the Rights of Persons with Disabilities.

In other words, the language of “special needs” leads to, and serves to excuse, a “can’t do” attitude as the default position of many general educators – it effectively deprives inclusive education of its necessary oxygen – a conducive “can do” classroom culture.

The label of “special needs” is inconsistent with recognition of disability as part of human diversity.  In that social framework, none of us are “special” as we are all equal siblings in the diverse family of humanity.

Source: “He ain’t special, he’s my brother” – Time to ditch the phrase “special needs” – Starting With Julius

It is also to acknowledge and discuss the fact that the disability rights movement has been having conversations about language and disability terminology for decades, and that many nondisabled people are (perhaps willfully) unaware of these conversations. They come up with complex and tormented euphemisms to talk about disability instead of just asking a disabled person if there’s an appropriate term. Many nondisabled people are shocked that many people with disabilities, including myself, view ‘special’ as a rank insult that is horrifying to encounter. This word makes me so angry. So angry.

Thus, when I say ”special’ troubles me,’ I mean ‘please do not use this term to refer to me, because I find it personally insulting, and I have an identity, that identity is disabled, please respect my identity by using the word I self identify with to refer to me’ and I also mean ‘I would vastly prefer that you consider not using it as a default/general term, but use it for self identification if you identify with it, and to describe other people who self identify with it.’ And, in return, if I know that someone identifies as special needs or with any other term involving ‘special,’ I will refer to that person that way, because I believe that respecting self identification is a critical thing. However, I note that I don’t personally know anyone who identifies with this term; I see it being used by nondisabled friends and family, applied as a label by others and not claimed as a self identification.

So, here’s what I, personally, don’t like about special: I feel like it’s an isolating word. I feel that the concept of ‘special’ stands in the way of full integration into society, and it also perpetuates some very harmful myths. It sets people with disabilities aside and stresses that they are different and alien. That using a wheelchair, for example, is ‘special’ and different and weird.

This word, to me, stresses a hierarchy of normality. And, thanks to the way that it has become twisted, it has become a singularly loaded word. Everything from ramps to quiet rooms for taking exams is considered ‘special treatment’ and sneered at. Nondisabled people think that we are pulling off some kind of giant scam here and that’s reinforced when we talk about, for example, ‘special education.’

The very idea that accommodations are ‘special’ stresses that they should not be expected. That they are a prize or treat. That you don’t deserve them. I want to see accommodations normalised. I want to see it assumed that everyone who wants to participate in something is able to do so, that no barriers are presented by other participants or the venue. I don’t want that to be ‘special.’ I want it to be ordinary.

Likewise, the idea of referring to human beings as ‘special’ is one I find troubling, not least because this term has become weaponised. I have trouble parsing whether it is being used as a celebration of identity or an insult whenever I encounter it.

Source: Ableist Word Profile: Special | FWD/Forward

The “special needs” language falls into normativity. There’s a “normal” and a “right” way to do things, and that way is how able people do it. If you don’t do it that way, suddenly it’s “special” because it’s different and scary.

“Special needs” is part of this dichotomy which is used to split able and disabled. Indeed, to alienate disability. Disability is different and “special” and hard and weird. “Special” is an isolating word, in fact, because it sets people apart, and not necessarily in a good way, no matter what the original meaning of the word is.

Think “special bus” or “special education,” both of which are used to isolate developmentally disabled folks from their peers, often under the argument that they are “hard to control” or “disruptive” or “upsetting” or, sometimes, just “gross.” People use “special” to push these folks away, to isolate them somewhere where they cannot bother the nice able people.

It’s one of the many euphemisms for disability which is used to create a veil of obscurity. Disability as Other. Indeed, “special needs,” a term which  people often use because they are fumbling for something else to use, looking for the “right” way to say it, is intensely othering.

Source: Needs Are Not Special | FWD/Forward

For one night, the special needs community will shine! And then the day after, they will go back to being ignored by much of their communities.

Here’s the real problem for me – why put this money behind isolated, segregated, events? I know Tebow et al. think they are doing good here, and I’m sure the people who go will have a good time. But it accomplishes nothing other than a brief moment of fake normality.

“Prom” didn’t matter to me, but to many people prom = normal highschool experience. So if people with disabilities are being excluded from such activities, if that’s something they want, then the solution is to put time and money behind making such events more inclusive and more accessible.

A segregated special event for special needs, no matter how well intentions, just reinforces the idea that people with disabilities cannot function in “normal” society.

Source: How Did We Get Into This Mess?:  Special Proms for Special Needs – Good Intentions but a Bad Idea

There’s a social media campaign going on right now to #SayTheWord – it was started by Lawrence Carter-Long, the Public Affairs Manager for the National Council on Disability, and is an active Twitter hashtag. The word, of course, is disabled.

The importance of this campaign is driven home to me over and over again as I see people performing ludicrous and painful contortions to avoid saying it. Reminder that when I make a criticism the way well-meaning people interact with disability, I am not attacking the people (parenthetical reminder that I was immersed in ableism myself not long ago), but inviting people to think about things in a different way.

Instead of saying disabled, nice people say things like:

  • differently abled
  • handicapable (yes, really)
  • physically/mentally challenged
  • special needs

It’s that last one, special needs, that I really want to take aim at, because I believe that seemingly innocuous phrase does serious damage to disability rights.

Every time someone says “special needs,” they reinforce the false notion that disabled people are asking for “extras” when we require accommodations, modifications, and/or support to access the same things that non-disabled people are able to access, such as education, public spaces, community involvement, and so on.

That’s the first problem, because access is not “special” for disabled people. It’s our right. The Americans with Disabilities Act of 1990, modeled on the Civil Rights Act of 1964, protects disabled Americans from discrimination, requires us to be accommodated in the workplace, and grants us equal access to public spaces and institutions. Other countries have laws in place to protect disability rights in similar ways.

The second problem is, the phrase “special needs” flies in the face of the social model of disability. The social model says, the disabled person’s inability to access things is due not to the disabled person’s failings, flaws, or deficits, but on the environment’s failure to provide access to the things. For example, a Blind person is not disabled because they can’t see, they are disabled because the world was set up by seeing people for seeing people and is made of many things that are inaccessible to non-seeing people.

Source: #SayTheWord, Not “Special Needs”

My son, who has Down syndrome, is 10. By the time he was 3 (thanks in part to spending his first few years reading everything I could get my hands on), it was pretty clear to me that while he had particular needs, they weren’t all that special. He needs an education, safe housing, independence, meaningful community, health care, and basically all the other stuff that everyone else needs. Our means to get him there might vary and require specific techniques, tools, and resources, but it’s not because his needs are so “special.”

Moreover, as a euphemism, “special” has become its own brand of insult. Anecdotally, I increasingly see people substituting the word where they might have used the word “retard,” because ableism can always survive the shifting of norms. “Special,” appended before “snowflake,” was the “defining insult” of 2016, according to The Guardian. “Special” connotes both undesirably different and unjustly self-centered.

In fact, there’s a broad cross-disability movement dedicated to working against euphemisms like “special needs” or “differently-abled.” While the origins of the expression “special needs” are complicated and debated, Rebecca Cokley, executive director of the National Council on Disability, explained to me that it’s clear “the term was never chosen by our community; it was chosen by educators, family members, and other professionals who felt uncomfortable by the use of the term ‘disability.’”

It’s not just about law, either. Lawrence Carter-Long launched the #SayTheWord campaign in 2016 to get people to use “disability” or “disabled” rather than dodging the issue. He told me that in the past, “Disability was only a diagnosis, but it now equals identity, it equals community, it equals history, it equals constituency. So part of saying the word is the recognition of the evolution of what the word has become.” He’s equally opposed to special needs, as a concept, because, “A need isn’t special, if other people get to take the same thing for granted.”

The #NotSpecialNeeds video doesn’t say the word disability, but I don’t know that it needs to do so. It’s an impressive piece of work, chipping away at the euphemism “special needs” with hilarity, positing scenarios that would qualify as special, like needing massages from cats or celebrities to conduct wake-up calls (the latter scene features John C. McGinley, the actor from Scrubs, whose son has Down syndrome).

Source: Stop Calling Some Needs ‘Special’

As Linton explains, “terms such as physically challenged, … handicapable, and special … are rarely used by disabled activists and scholars. Although they may be considered well-meaning attempts (by people without disabilities) to inflate the value of people with disabilities,” these terms “can be understood only as a euphemistic formulation, obscuring the reality” that disabled people are not “considered desirable.”

We predicted and observed that persons of all ages are viewed more negatively when they are described as having special needs than when they are described as having a disability or having a certain disability.

Our research supports many style guides (and disability scholars) who prescribe not using the euphemism special needs. In addition to its negative connotations, we argued special needs is imprecise; it can refer to groups as unrelated as minority and bi-racial children in the realm of child adoption; middle-age adults and persons without personal transportation in the realm of disaster preparedness; and pregnant women and people with nut allergies in the realm of airline travel).

Special needs also connotes segregation. Most special programs (e.g., Special Olympics and special education) segregate persons with disabilities from persons without disabilities. Special needs also implies special rights. In our research article, we pointed to an OpEd in The Chronicle of Higher Education that misconstrues legally mandated disability rights as special rights, as well as similar misconstruals observed in common vernacular.

We concluded that special needs has become a dysphemism, similar to lame (e.g., a lame idea), crippled, blind (e.g., blind to evidence), and deaf (e.g., deaf to reason). Our research did not explore whether non-disabled people’s use of special needs is intentional (although some instances clearly imply negative intentionality). Perhaps, as Simi Linton suggests, non-disabled people’s ambivalence about disability rather than sharp repulsion underlies their use of the term special needs. Regardless of speakers’ and writers’ motivation, our research recommends not using the euphemism special needsand instead using the non-euphemized term disability.

Source: Special needs, euphemisms, and disability

Although euphemisms are intended to put a more positive spin on the words they replace, some euphemisms are ineffective. Our study examined the effectiveness of a popular euphemism for persons with disabilities, special needs. Most style guides prescribe against using the euphemism special needs and recommend instead using the non-euphemized term disability; disability advocates argue adamantly against the euphemism special needs, which they find offensive. In contrast, many parents of children with disabilities prefer to use special needs rather than disability. But no empirical study has examined whether special needs is more or less positive than the term it replaces. Therefore, we gathered a sample of adult participants from the general population (N = 530) and created a set of vignettes that allowed us to measure how positively children, college students, and middle-age adults are viewed when they are described as having special needs, having a disability, having a certain disability (e.g.is blindhas Down syndrome), or with no label at all. We predicted and observed that persons are viewed more negatively when described as having special needs than when described as having a disability or having a certain disability, indicating that special needs is an ineffective euphemism. Even for members of the general population who have a personal connection to disability (e.g., as parents of children with disabilities), the euphemism special needs is no more effective than the non-euphemized term disability. We also collected free associations to the terms special needs and disability and found that special needs is associated with more negativity; special needs conjures up more associations with developmental disabilities (such as intellectual disability) whereas disability is associated with a more inclusive set of disabilities; and special needs evokes more unanswered questions. These findings recommend against using the euphemism special needs.

Source: “Special needs” is an ineffective euphemism | Cognitive Research: Principles and Implications | Full Text

They are not “special” needs. They are needs I have because of disability. Saying it differently doesn’t change the fact. Saying it differently actually perpetuates the stigma around disability, increases the likelihood people will continue to see me as other and broken, and decreases the chance my needs will be met.

Too often proclaiming a person has “special needs” is the trigger for people to give up, asserting that sometimes there is “just no solution” and that the disabled person will have to “learn to cope” and “develop their skills” so they can “fit in to society” and “have a hope of getting a job and making friends”. When in fact there is always a solution that respects the rights of the disabled person, and we regularly live meaningful valuable lives as ourselves without having to change and fit in to societies unrealistic expectations and arbitrary rules of existence.

All people have needs. When their needs are met, all people live their lives well. All people receive help to see their needs met from time to time. Our society works on shared ideas, spaces and resources. Assisting a non-disabled person to see their needs met is not perceived as heroic, patient or inherently good. It is called living life in community.

Source: My needs are not “special” – Michelle Sutton 

During these 12 years, many things have changed, my vocabulary too. I don’t use the word “normal” anymore, I use “typical”; I don’t use the word “special” anymore, I use “disabled”; I don’t use the word “gift” and I don’t consider my daughter as a superheroine; I’m not a “special mother” and my daughter is a girl with Down syndrome who lives her life with the same need to belong as everyone else. Euphemisms are not helpful so let’s call things by their name – disability #saythewordit’s what disability activists ask for. To tell it like it is allows me to look at things without hiding, to face life in a direct way. And it allows Emma to do the same. I feel as if I am respecting my daughter more, as if I am giving her the chance to define her own identity over time, of which disability is part.

Source: NotSpecialNeeds

Adults with disabilities ask that you say “disability” and not “special needs” when you are talking about disability. As Louisa Shiffer said,

Disabled people should control the conversation about their disabilities, and the language used about them, not their parents.

“Handi-capable”, “People of all abilities”, “Different abilities”, “Differently abled” and “special needs” were made up outside of the disabled community, by people without disabilities. Their continued use, and the defense of their use by people without disabilities reeks of able-splaining; that is, people without disabilities explaining disability to people withdisabilities.

Then the word “disability” makes complete sense. Those of us living with a disability are absolutely living a dual existence: we move through the mainstream world which is largely inaccessible and not disabled, and we have our own experience with the fact of our bodies.

We see, hear, speak, think, learn, process, read, write, move, and/or feel in ways that are less common than most. We have a lot to offer, by dint of our experience with disability and where our interests lie. Our needs are not special, so please: say the word, as we are asking you to.

Disability.

Source: 3 Reasons to Say “Disability” Instead of “Special Needs”

Why, oh why is this still such a common term? It makes no sense to me. By much the same logic that explains why “differently-abled” is inaccurate, it’s clear that “special needs” is too. If you are a human, you have needs. Everyone has needs. What makes mine so “special” just because I have a disability? Nothing.

My needs are not “special” just because they’re not met in ways identical to the needs of non-disabled people. I need a ramp; you need steps. Not special, just facts. I need a wheelchair; you walk. Not special, just facts. Moreover, the needs of non-disabled people certainly aren’t all met in the same ways. Just like every other living, breathing human being on this planet, I am a person who has needs that must be fulfilled in ways appropriate to my abilities.

Whether you’re disabled or non-disabled, I urge you to realize why euphemisms really aren’t a show of respect, no matter how well meaning your intent might be. They can be disempowering, patronizing, and even hurtful. So please, just call me a disabled woman, because that’s who I am, and that’s who I’m proud to be.

Source: 4 Disability Euphemisms That Need to Bite the Dust | Center for Disability Rights

“Special needs” is a patronising euphemism. Special, by definition, means “better, greater or different from what is usual”. In reality, ‘special’ in the context of “Special Needs” is a disingenuous use of the word. What people seem to mean when they say ‘special needs’ is that people with impairments require more attention, they are more expensive to care for and are more difficult to provide for than those without impairments. So what is the result? A situation where people with impairments are excluded because they have “special needs” they are more difficult than those without “special needs”.

However, in reality, we all share the same needs. Everybody requires water, food, shelter and love, in order to survive. In parts of Africa, we have seen disabled young people who have been isolated. They have had no food or drink and no love. These people are not special, their needs are the same as all of ours.

Despite the fact that the vast majority of people (including me) use certain terms with the very best intentions, sometimes it is counter-productive. Merely labelling a group of people – disabled people – as “special” implies they are recognised as being far different from everybody else. The consequence of this is that they will be treated differently, ensuring that the stigma (which exists in all cultures to varying degrees) remains. This is the opposite of inclusion, despite the fact that inclusion is often the aim when using the term “special needs”.

Terminology and language are so important: once we separate people in discourse and our minds, we then start to separate people in practice. History shows us that this is a dangerous thing to do.

Source: We need to rethink the term ‘special needs’ – here’s why — Disability Africa

I believe that a reason why, as a society, we have not embraced children with disabilities as full participants in our schools and communities has to do with the limitations of our own mental models around disability.

We have moved from hiding and institutionalizing kids to a world where children with disabilities are seen as special and placed in special settings and given special services with special caregivers and they, and their families, have become disenfranchised from the community at large and they have become in fact their own separate community.

I believe that “special” has become a euphemism for “separate,” and when we separate kids and we place them in separate settings and give them separate services we are teaching them that their place is over there, with people like them and not as part of the full community, and when young, impressionable children learn that their needs are too great that they are too different and that they don’t meet our very narrow definition of what normal is, this has a life-long effect on their ability to contribute positively to society.

Source: Isn’t it a pity? The real problem with special needs | Torrie Dunlap | TEDxAmericasFinestCity – YouTube, transcript

See also,

Transitioning from invisible to visible disability

It’s 9am, and I’m still in bed. I’ve been uncomfortably conscious for hours thinking about how I will spend my spoons. Gravity pulls like a sickness. Just being awake costs.

I have to go out in public today. I can’t walk or stand for more than 5 minutes without suffering. I need something to sit on everywhere I go. My journeys are a seating map. The grocery store has few seats, and they are often sticky. Aisles and aisles without seating means I have to bring my own. My rollator makes errands possible.

I’m dreading today’s doctors’ appointments. Doctors’ offices and hospitals have seating, but those seats are in sensory spaces that make me stim. I still have the reflex to pace to manage sensory overwhelm, but my body ain’t having it. I’ll gouge my scalp bloody instead.

I can walk when I must. I can push myself through as much as 20 minutes of standing and walking, but the cost is great. I need the rest of the day to recover from such a reckless waste of spoons.

I sometimes long for a wheelchair. Far from being confining, a wheelchair would be liberating. I could stim with movement. I could save some spoons. I could stay below my diminishing thresholds.

I dread the moment of rising from the chair in front of others, though. Getting up from a wheelchair to navigate an inaccessible threshold, reach for something, or simply stretch does not compute for our ableist societies. You are judged a fraud, a fake, someone trying to get something you don’t deserve.

A wheelchair is in my future. Without one, I can’t go on outings with my family without melting spoons. I can no longer push past the shrinking limits of my endurance. I’m using a rollator now, but it can be slow, uncomfortable going. Even with rollator assistance, walking is a struggle with pain and gravity. A wheelchair would be enabling, but using one involves a direct confrontation with systemic inaccessibility and ableism. Am I up for it? My body becomes more and more convincing about its need for a chair, but I am reluctant to put up with more ableism than I already experience.

Wheelchairs are the symbol of disability. Transitioning to visible disability would avoid some invisible disability tropes, but those would be replaced by other tropes. And the moment I demonstrate that I can still, for now, walk, that symbol becomes an indictment.