Excluded by Inclusion Activists: The Cost of the Failure of Epilepsy Awareness

If your daughter has epilepsy, we don't want her here.

These aren't the exact words spoken to me this last week, but they're an accurate paraphrase.

The message was crystal clear (conveyed four times over, by four different people, in four separate conversations): Awesome is not welcome at their local non-profit exercise facility--one geared specifically towards enabling the disabled and those with chronic medical issues.  In fact, in case I didn't get the message loud and clear enough, I was told that she could never step foot in their pool.  Ever.  And that she was excluded from doing so specifically because she has seizures and Epilepsy.  Because people with seizures are simply NOT allowed in their pool.  Ever.  Period.  End of story.

It's hard to overstate just how crazy disturbing it is to hear something like this said about your daughter because of her disability--especially when it's coming from the mouths of disability inclusion advocates and activists--people whose lives have been dedicated to enabling the disabled in fantastic and amazing ways.  It's surprising, bewildering, sad, disappointing, and yes, even infuriating.

Shouldn't inclusion activists know better than to treat anyone with a disability this way?

It's also unbelievable that your daughter--and others with Epilepsy--could have been singled out for exclusion from an institution that is a nationally known for enabling persons with disabilities and chronic health issues.  The facility's mission--their reason for existing--is to provide exercise facilities that offer accommodations to people with disabilities and chronic health issues.  This institution recognizes that it's important that persons with disabilities have access to physical exercise--for all the benefits that exercise provides to overall well-being.  This facility has tons of innovative programs for kids with various disabilities.  In being a US Olympic and Paralympic Training Center, they also house programs providing serious athletic training for high level accomplishment.

The center caters to those with serious physical disabilities or chronic health conditions (like diabetes or morbid obesity or Ehlers Danlos).  Fully half of its list of "qualifying conditions" are neurological issues, among them serious ones like ALS, Parkinson's, Stroke, Cerebral Palsy, Multiple Sclerosis, and Muscular Dystrophy.  It's also open to all those over 60 years of age (who don't have seizures or epilepsy) because, as it was put to me, "those persons are headed towards disability."  (??)

The campus also houses a rehabilitation hospital and a national advocacy organization that encourages inclusion of persons with disabilities and chronic health conditions in physical activity.  The national advocacy organization's motto is, ironically enough, "Building Healthy Inclusive Communities."  And though their website is littered with declarations about their "commitment to inclusion," yet, they passionately defended the exclusion of my daughter and those with Epilepsy from their campus's exercise facility and its programs.

 How does all this lofty advocacy for inclusion and accommodation square with excluding those with epilepsy?

I dunno, you tell me....

Hearing four different people--the Youth Aquatics Coordinator, a Front Desk Receptionist, the Chief Program Director, and lastly an Information Specialist (Former Recreation Specialist) who worked with the affiliated inclusion advocacy organization--attempt to justify this policy with their own ideas and arguments--especially when many of those arguments were predicated on fear of and ignorance about Epilepsy--simply made it all worse.  Three of the four went on and on and on, grasping at straws, and in the process, making some of the most absurd statements I've heard in a long time.  Presuming all sorts of things about those with Epilepsy. Making statements that were untrue--though I think they THOUGHT they were true--about everything from Red Cross Pool Safety rules concerning Epilepsy to lifeguard training concerning seizure management.   And that just scratches the surface. It was as if by they thought that by explaining and talking (saying things that didn't make sense), they could make their stance make sense, and make what they were doing in not wanting to deal with people with seizures into something other than what it was: not wanting to deal with people with seizures.

I'm not saying that the people I talked to are bad people.  They aren't.  Or that they aren't nice people.  They are.  In fact, the fact that they are good, nice, well-intentioned people in some ways makes it all much worse, more bewildering, and so much harder.

You see, I've hung around with minority advocates and activists long enough to know that this is what most everyday, run-of-the-mill prejudice and discrimination usually looks like.  Nice people presuming, stereotyping, imagining the worst, justifying their prejudices, and then arriving at their dubious conclusions.  Nice people failing to see the persons involved as individuals and instead, seeing them as categories of persons, all largely the same and all viewed through a lens in which the most negative and extreme among them (the group, that is) becomes the norm--the way all people in that class are presumed to be.  The variety of individual uniqueness melts away until all that remains is an abstraction of a person, a straw man, as it were, fearful to behold, devoid of humanity and all the qualities that make each of us not only human, but uniquely ourselves. That spark of relate-ability which makes us amazing to behold as human persons is simply gone.  Poof!  And all that's left is something easy to dismiss. Not a real, living, breathing, unique human being.  Which means that it's suddenly infinitely logical, wise, and even prudent to avoid, exclude, and not be bothered with all those so categorized....

It's simply true that the kinds of prejudice and discrimination that we all love to hate--where people are directly, purposefully ugly and hateful--is relatively rare. Common, garden-variety prejudice and discrimination, it turns out, is all about attitudes, thoughtless statements, ignorance, lumping people in groups, failing to see diversity within groups, and the failure to really count people as equals.  Everyday prejudice is unintentional and often subconscious.  Or to use religious language, prejudice is most often a sin of omission, rather than a sin of commission.  It is to leave people out because they're not like you.  Or to not include them because they require more effort on your part--a mind expansion of one sort or another--to understand them, their differences and similarities to you, and their lives and life experience.  And so rather than putting in the effort to make them real and compelling, you choose to have them remain a caricature of your own making.   People living lives you don't understand.  And don't want to understand.  Because the whole mind expansion thing doesn't fit into the organizational scheme of your cozy little world.  And you can't be bothered.

It's amazing how readily people make distinctions and choose to see the differences instead of similarities.  How easily they grasp for justifications for the objectification and dismissal of persons into the class of  Other--people different from us.  Not in our group.  Not our problem.  Not our concern.  Not one of us.  Not wanted.  Dismissed from mind.

As I mentioned, I had four conversations with four people over four days about my daughter's potential relationship to this institution.  After the first conversation, I was bewildered.  After the second, I was angry; I had a lot of trouble sleeping that night.  All the words and ideas and phrases kept churning in my mind, looking for organizational order.  For justice.  And truth.  But in the end the truth simply was that this facility--instead of being the understanding haven filled with accepting persons I'd assumed it would be (and I'd sought it out because I'd thought it would be easier than trying to mainstream)--was the worst, least inclusive, most prejudiced facility and group of people I've ever encountered.  And so, after a sleepless night, I gave myself a day to calm down, to recover, and to think about the situation.  By the third day I'd succeeded in calming down, but I still couldn't wrap my head around it all.  But as I contemplated it all, I became more and more curious.  Even fascinated.  Here was my chance to get inside the head of prejudice and exclusion.  I simply wanted to know how these people thought, what the beliefs were that made them think what they thought, and why they thought they could and should exclude people with seizures and epilepsy.  What were the lies they were telling themselves in order to contradict their own stated value system?

There was a usefulness to my curiosity.  If minds are ever to be changed, you have to know what's in people's heads to begin with.  Epilepsy Awareness--like all just causes--is a battle for the hearts and minds.  If you haven't even won the hearts and minds of those who should be your staunchest allies, then clearly, Epilepsy Awareness has not only failed to succeed in your society, it has failed in the most profound way possible.  And so we'd better be taking a look at what is in our frienemy's minds.  And analyzing our failures.  And figuring out how the hell to correct them.

By the time of my third and fourth conversations, I no longer simply wanted to scream at these people and bang on their closed doors until they opened them. (Frankly, even if they opened at this point, I wouldn't let my daughter walk through them--I never want her to be where she's not wanted or grudgingly accepted.  They'd have to roll out the red carpet with apologies and arguments above and beyond my own at this point).  Now I wanted to pick their brains with the goal of learning enough to change their minds.   I also want to make these people allies so that I can learn from them.  Because they HAVE succeeded in their goals.  While those who are Epilepsy Awareness advocates, have failed.  I was simply trying to unpack and understand what in the world was in their heads...  And maybe correct a few misconceptions along the way.  And make my sales pitch as to why they should reconsider their stance.


One of the oddest things about some of these conversations was how quickly and easily the person shifted from making one argument for exclusion of those with epilepsy to making exactly the opposite one.  How can you simultaneously argue that those with Epilepsy both need no accommodations--so that they don't belong at their facility--and at the same time argue that people with Epilepsy need so many, very onerous accommodations that they couldn't possibly accommodate them at their facility?   When someone's argument shifts so easily from one pole to the exact other, it's easy to discern the bottom line: ignorance, fear, and prejudice.   The take-away?  Dealing with people with epilepsy is scary and far more trouble than it's worth.  Not something we want to do.  Please go away; let us keep doing what we're doing and let us feel good about it.  We don't want people with Epilepsy around because it would require too much of us.

Sometimes one observes the grasping at straws over and over again, until the arguments, offered one after the other, merge and run together into a kind of Impressionist painting where the overall picture finally starts to emerge from the blurry, smudgy indistinct, hard to discern details.  When all is said and done, what remains of all these conversations with their dubious, ignorant, untrue, irrelevant, hypocritical, and even ridiculous points is the clear impression of an attitude towards persons with Epilepsy.

The last person I talked to at this organization--the Director of the facility--was very smart.  She quickly got the point of what I was saying.  She realized what it sounded like to hear what she and others were saying to me and my daughter.  And in the end she agreed that the organization would consider "expanding their circle" in the future--as they do periodically. And in the meantime she said she'd think about what I said and ask their doctors about including children with Epilepsy.  And in turn I understood what she was saying about the fact that their organization has a mission for a certain population.  And my daughter was not in their target population.  But she also got that they had somehow uniquely excluded my daughter and those with Epilepsy, though I don't think she fully understood just how onerous their exclusion was compared to other facilities--a policy that went out of its way to single out my daughter and her kind.  And how that was uncool.  I also helped her understand that there is NOTHING whatsoever out there in our city right now--no programs, no support groups, no activities, nothing--for kids and people with Epilepsy.  At all.  And how that feels.  And how that looks discriminatory.  And like no one cares.  And how this made life with Epilepsy all the harder when it was already hard enough.

The fact that the Director and I came away respecting each other, in no way excuses the ridiculous things I heard from the people with whom I talked last week--including the Director herself.  The ignorance.  The fear.  The fishing for justifications to exclude. The way that it felt to listen to several someones who couldn't see their own blind spots.  That couldn't see that they were contradicting their own values.  That couldn't see that they were doing to my daughter and to those with Epilepsy exactly what they had had done to themselves or to those for whom they advocated.  How can an organization that preaches inclusion exclude so easily without any self-reflection whatsoever?  Without any attempt to seek out the facts, but by simply making assumptions --based on stereotypes and lack of real facts--about the people they were excluding?  Isn't that the essence of discrimination?  Isn't that the essence of what the Americans with Disabilities Act is supposed to guard against?  Leaving whole groups of people out in the cold.  Not worrying about including them but feeling justified in excluding them.  Not wanting to be bothered with the cost and effort it takes to make the normal things of life accessible to persons who are different in some way?

Of course, as the Director pointed out, this institution is a private not-for-profit organization that can decide for itself what its mission is or isn't.  Whom they will or won't serve.  Whom they will or won't include.  Whom they will or won't exclude.  Every organization, by necessity, defines its own mission.  It can't do all things for all people; or be all things to all people.

However, specifically excluding those with seizures and Epilepsy in the strong way they have--above and beyond what any pool anywhere else does such that a person with Epilepsy is prohibited from ever stepping foot in their pool, is not just wrong, but may actually be illegal.  It's extreme. And it hurts.  It's like a slap in the face for those with seizures and Epilepsy.  And its just plain ignorant.  Any one can have a seizure at any time.  They are already willing to make extreme accommodations for those with various other conditions.  Persons with Epilepsy wouldn't need these extreme accommodations from moment to moment.  Just a willingness to deal with occasional issues.  The kind of willingness that they extend to those with Ehlers-Danlos, who are prone to limb dislocation, or to Diabetes, who are prone to blood sugar crises (and possible resultant seizures).  A willingness to extend dignity, inclusion, and acceptance to those with Epilepsy.

My husband is a law professor, and he suggested that the facility's stance towards those with Epilepsy may, in fact, be a violation of the Americans with Disabilities Act.

I don't yet know enough to know.  But you can bet your sweet disability inclusion bumper sticker that I will be figuring it out.  Because I do intend to understand and advocate for change.  Because I intend to educate.  And if this facility is, in fact, in violation of the Americans with Disability Act, you can count on me letting them know that that is the case.  Again, because I want things to be different in the future.  I don't intend at this point that my daughter ever step foot on their precious campus--even for friends' birthday parties....because she does have a friend who's a member there, who swims on the swim team, and who--in the past before this organization realized that my daughter had Epilepsy cooties--had had a birthday party there that my daughter had attended.  And yes, ironically, she had swam in their very precious pool in their gorgeous aquatic center.  That won't be happening again....

Innocence is a terrible thing for a child with a disability or chronic illness to lose.  You want to save them from that moment when they first experience the ugliness of realizing that someone doesn't want them around because of their disability.  That moment when they realize that someone has no intention of ever getting to know them as an individual because they are seen as a category instead of a person.  When they feel they are lesser in some way because of something they never chose, but that chose them instead, and that they cannot change.  Something that they themselves hate and would do almost anything to not have to deal with.  Something that negatively affects every minute of their lives and robs them of so much.  And apparently causes others to rob them too...

As Awesome listened to the fourth conversation--the one I had with the facility's Director--and she did insist on listening to it (At 12 years old there are some things I will no longer hide from her; after all, she's the one with Epilepsy)--her eyes welled up with tears, she looked away, and she became very quiet.  She would not make eye contact.  She got the shrinking-in-on-herself, shutting-down-emotionally look of someone who is experiencing deep trauma.  She sat very still for a long time.  And when she had recovered from being shut-down, she got angry.  She shook her 12 year old fist and made declarations of hatred for this facility and its prejudices and its exclusion of her.  It might as well have stabbed her right in the innocence of her heart.  It took her several hours for her to recover.  But in some ways, she'll never recover completely.  She'll never be as innocent as she was before.  It was an ugly introduction to the bullshit--the stigma, the discrimination, the ignorance, and the exclusion--that she'll live with for the rest of her life.  It's just really ironic that it came first from the disability activism community.  From people who should know better.

 Damn you all for wounding my child.  How could you do this to my Awesome?