“When I’m not there I’m still Here: Redefining ‘Contribution’ and ‘Value.’ “

I’m Chronically Ill and Disabled.  I’m an Activist.  I’m a student and I miss school for days at a time because I get sick.  A lot of the work I’ve done has been unpaid or underpaid and therefore undervalued.  Over the years, I’ve encountered many folks who believe that I cannot be an “effective” activist if I’m not physically present at events and actions.  I challenge people to question definitions of “effective” and “valuable.”  We must also deconstruct the term “productive.” Such terms have historically been used to discount the contributions of marginalized people.  These terms are also used to create and maintain hierarchies–if we can establish whose contributions are most “valuable” & which people are “valuable” then oppression is justified–and abuse is justified–and dehumanization is justified.  Also, it’s becoming more apparent to many–as we move toward an online world–that physical presence is not necessary to make an impact, to create change.

So–If most of our daily activities happen online why do some people still uphold physical contribution over all other (and equally important) forms of contribution?  Why aren’t human beings viewed as inherently valid–as contributing just by existing?

Because institutions and businesses are threatened by this.  In fact, the entire system is threatened because we threaten the current value system that equates physical presence & contribution with some kind of quantifiable exchange.

Capitalism wants us to believe that the most real contributions come from physically participating–physical presence. for those of us who cannot be physically present–our contributions are often discounted or down played.  Ultimately, all contributions are valid because all beings are inherently valuable.  This is something that radically reshapes the value system we’ve been taught. The more we recognize ALL contributions, the more the idea of power shifts–it’s no longer completely externalized–it’s internal and complex–and constantly shifting and changing form.  Ultimately, it is more difficult to control people who are in touch with their inherent power.

As I write this, I realize that it’s sending ripples of change out there–& no matter how small the effect is, it is still an effect.  It is still a contribution and it is just as meaningful.

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How to be an Ally to Disabled & Neurodiverse Folks in Activist & Academic Communities:

**Note:  This is based on my own  experience as a multiply marginalized Disabled, Trans, Queer, Autistic activist. In compiling this list, I consulted other Disabled activists as well. Most activism I’ve been involved with has taken place in  Queer activist & academic communities. I’ve been both a grass-roots activist and a student activist. I do not claim to speak on behalf of Neurodiverse or Disabled folks–or any group for that matter.  Here are a few ideas I’ve compiled on how to be a better Ally to folks who have been left out of social and political movements/communities:

–Make your events/social gatherings accessible. Disabled, Neurodiverse, & Chronically Ill folks are frequently excluded from community building spaces.  This means that Disabled folks are often isolated.  Extreme isolation is still used as corporal punishment in the medical-prison-industrial-complex.  Isolation is a form of cultural abuse and the consequences are severe—they lead to trauma, depression, hopelessness, among other things.  To be truly radical means including the most isolated and silenced folks.   Accessibility means you wish to include us—it is a warm embrace, it means you value and care about our well-being and safety.  Accessibility includes (& is not limited to):  wheelchair ramps,  accessible elevators,  gender-neutral & accessible bathrooms, having events near bus lines, scent-free spaces, interpreters, sensory-friendly events (no fluorescent lighting, no pressure to socialize, quiet, “echo free” spaces, etc.), captioning, alcohol & smoke-free events, couches near the dance floor, events that are not too early/late during the day, childcare options.

–Understand intellectual privilege.  Know that IQ has been used as an oppressive means of social control & was once enforced by proponents of the eugenics movement.  Additionally, academia appropriates the struggles of marginalized groups.  Resistance started in the streets by Disabled folks, Queer folks, Trans folks, Poor folks, & Folks of Color–Folks who experienced oppression on many different levels. Emphasizing intellectualism (intellectual privilege) reinforces the idea that folks should conform to one form of intelligence—that is, the “intelligence” as defined in white, able-bodied, elite, academic settings.  Acknowledge that there are many forms of intelligence, that people are beautiful & amazing regardless of perceived intelligence.  Make a point to include all folks.  We all have something valuable to contribute.

–Embrace different forms of communication: not everyone can or wishes to communicate verbally. Some folks prefer to communicate non-verbally, some people communicate with their bodies.  Accept that there are people who do not want to communicate, touch, or engage socially as much as you do.  This does not mean that we care less or dislike you—it simply means that we connect in ways that you may be unfamiliar with.  Try not to make assumptions about eye contact or body language.  Always ask before touching someone.  Never force eye-contact. Value the contributions of shy, introverts—not just the extroverts!

–Avoid using stereotypes to ask about someone’s Disability.  For instance, when I tell people I’m Autistic many folks think they’re trying to help by mentioning Temple Grandin or the Rain Man.  Assumptions and stereotypes can be harmful and offensive.  Never ever assume that it’s our role to educate you about our Disabilities.

–Avoid the “What do you do?” question.    Recognize that not everyone can find accessible employment. This question often makes folks who are not employed feel  left out.  Many people deal with internalized classism & ableism b/c they do not work.  Recognize the privileges that accompany employment—social connection, higher income, sometimes health insurance.  Many folks who are on social security are paid very little—we’re talking around $650 a month.  Folks on Disability are frequently surveillanced and punished when they try to find accessible employment.  Just because folks are on Disability does not mean they’re lazy or unmotivated.  It means the system is ridiculously complex and oppressive.

–Deconstruct the politics of desire. I will write more about this in terms of how it relates to dating in another post.  However, deconstructing the politics of desire is completely necessary in building inclusive movements.  The politics of desire shape who we include and who we exclude. The folks who are most usually in the “spotlight” in our communities benefit from white privilege, attractiveness (or “body”) privilege, able-bodied privilege, class privilege.  Body/attractiveness privilege means folks more closely fit in to the dominant construction of attractivenenes/beauty.  Though there are exceptions of course, we must constantly deconstruct the politics of desire in our communities so we can pay attention to who is excluded and determine if the folks we’re excluding are because they lack certain privileges. As I write this, I acknowledge that I also benefit from privileges that provide me greater access to spaces and communities. *The flip-side of desxualization is fetishization/tokenization which is not ok either.  The politics of desire run deeper than just “sex” or “sexuality” and is about how we view folks as full people.

Desire is very complex and it is also socialized.  The most “desirable”—often white, class privileged, thin, cisgender, able-bodied people are included while  “less desirable” folks (folks who fall out of the normative construction of desire) are excluded.  Disabled people are often still regarded as non-sexual beings.   Classifying an entire group as non-sexual robs us of our humanity.  Desexualization a form of dehumanization and cultural abuse.*  Though desire is complex, it is important to recognize the ways in which we’ve been taught who is beautiful and who is not and how “beauty” is used to create hierarchies and oppress those who don’t “fit in.”  Disabled folks , Poor folks, and Gender non-conforming folks (within Trans communities: Trans Women are excluded), & Fat folks are frequently left out of social & activist circles. Less “desirable” is so often equated with less “cool/hip.”  We as a community need to deconstruct the ways in which we love and connect.  Examining the politics of desire is crucial in creating a culture of inclusion.

*For more information on Desexualization as it relates to dating, check out “Dating from the Margins: Desexualizing and Cultural Abuse:”  http://gudbuytjane.wordpress.com/2011/10/13/dating-from-the-margins-1/.

–Check your ableist language.   For examples of ableist language (& why we shouldn’t use it) check out this blog:  http://disabledfeminists.com/2009/10/12/ableist-word-profile-lame/.

–Confront “social capital” mindsets. Social capital means that your “position” in society.  It is most often associated with class privilege.  People with more class privilege typically have access to more power and social connections because of their privileges.  Disabled people are often poor and isolated and therefore have less social capital.  Because of inaccessibility, we often do not have access to spaces where social connections are formed. We must work hard to include folks who do not have access to social spaces.

We have all been taught that more social connections=better. Who are we leaving out when we make social connections? What are these social connections based on?   Capitalism tells us that the more people we surround ourselves with who have greater access to “power” (read: resources, social capital) the more “power” we will have.  This mindset is oppressive, reinforces the capitalist mindset, and excludes the most isolated and marginalized folks in our communities.

–Redefine “Value.”  People are no less “valuable” or important if they are not physically present in activist movements. It just means that society is inaccessible and sometimes it’s impossible for someone to be physically present. We can all work to undo this—accessibile, scent-free spaces, thinking beyond physical accessibility, offering rides, helping with bus fare.  We can redefine “value” as something that is inherent–that we are valuable because of who we are, not what we do.  This helps fight the oppressive Capitalist “value” system. We can work together to build more inclusive movements.

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Creating a Culture of Inclusion: The Power of Accessible Spaces. Opening Notes.


Accessible spaces for individuals who are marginalized–who are subjected to abuse on many levels–symbolize an opening, a release, freedom. An open space is an open embrace. For those of us who live on the margins of the margins, who have to fight to prove our existences, who are excluded from movements, who are subjected to abuse in the form of isolation, having access to spaces means having access to community–to connection–to existence.

When we make spaces accessible, when we build movements based on inclusion—we are acknowledging that each person is inherently valuable and our existence is beautiful and necessary.


Creating accessible spaces means acknowledging that connection is necessary—that community is necessary–that our culture has been built on the myth of separateness—the lie of disconnection.  We must move from independence to interdependence in order to transform society.

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