Help Create a Crisis Line for PwD, by PwD

 

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Taking a break from the usual dark, personal content to tell you about an initiative that I’m working my butt off to make a reality: A crisis line, run by people with disabilities, for people with disabilities(PwD). It’s a wonder that a crisis line specifically for PwD doesn’t already exist. After all, we’ve got crisis lines for the LBGT+ community, and for people that are experiencing abuse, we’ve got teen helplines—we’ve even got one for helping kids with their homework. We recognize that certain circumstances warrant help from people who” get it” (ugh, homework), and yet we don’t have any phone support for those struggling with disability-related stuff.

It’s a puzzle as to why that is, when the suicide rate of PwD is 2.5 times higher than the average population in North America. (Depending on where you look— despite high risk, PwD are often overlooked in suicide prevention and analysis, which is another classic example of erasure. I digress.) Other deeply alarming facts, like how over 80% of women with disabilities will experience sexual assault in their lifetime, scream for the development of a disability-specific crisis line.

Aside from gut-wretching stats, there’s the simple, undeniable truth that living with a disability can be fucking difficult sometimes,. It’s hard when doctors don’t really know how to treat you, or assume your disability is the root of all your health problems, instead of examining you properly. It’s wearing to have to educate people often, on what your disability is and how it affects you. It’s tiring to fight against subtle or overt discrimination, against hate speech, against ignorance that has kept you isolated so many times in the past. It’s heartbreaking to grieve loss of ability, and to not have the ongoing support needed as you enter life as a newly-disabled person. And these are just a few of the struggles we so frequently face, as PwD.

If we can’t immediately remedy the ableism at the root of many of these troubles, the least we can do is provide emotional support for PwD, and that’s why I’m trying to start a crisis line for PwD. To give us a space to talk, to vent, with someone who knows what it’s like to live with disability. To have a number to dial when you’re looking for disability-related resources. To bridge the gap, create connection, break isolation.

So. If you’re reading this, and you’d like to help make a crisis line for PwD come to life, there are a few ways you could help:

  • if you’re a PwD who wants to tell me their thoughts on a crisis line, and how it can bet serve PwD
  • if you know anything about writing grants
  • If you know anything about crowd sourcing/fundraising
  • If you can tell me why having a crisis line for PwD is a shit idea
  • If you know of any excellent resources/social agencies, that serve PwD well if you know of an organization that might help fund a crisis line for PwD.

Finally, the rate of unemployment for PwD inON is nothing short of pitiful, with PwD at 51% unemployed, while those without disability have an unemployment rate of only 21%. Many organizations struggle to be accessible to those that may work best from home, or with accommodations in an office setting. The Partnership Council on Employment Opprtunities for People with Disabilities’ report states that businesses are reluctant to hire PwD because of concerns regarding “absenteeism, lower productivity and expensive accommodations.”

These ableist (and disproven, see further down on the linked page) beliefs clearly have an impact on the disabled population with respect to employment.It’s crucial that we work towards changing that reality, and in order to that it would be a priority to pay PwD support workers adequately. Hence, the crisis line would likely start off small, with paid workers, and grow as more funds become available.

All suggestions/thoughts are welcome—Don’t hesitate to email me at Kristen.williams10@gmail.com The more feedback, the better. Thanks, folks.

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#AbleismIs (Fuck Ableism)

#AbleismIs

What’s the best way to maintain inequality? Never name the fire that fuels it. The best way to hog power and control? Keep people in the dark about the ways they’re being mistreated; be it by individuals or institutions. Tell them it’s their fault. Redefine their reality. Tell them they’re losing they’re mind, that they did this to themselves, over and over until they take it for truth.

I’ve been asked to define ableism multiple times in the last few months. Each time, my stomach clenches with fear and retreat, as many different instances unfold themselves in my mind’s eye. I can’t. I think, almost instinctually. Putting the complexities of my daily life into tangible, understandable terms of oppression feels all-too-intense.

As intense as unacknowledged oppressions are, silence is worse. Silence is harmful. Silence manifests more ableism. I’m done with silence, and below is some of the ableism I experience. Add your experiences with ableism, so we can paint a fuller picture together, and hopefully dispel the power held by silence and ambiguity.

#AbleismIs a contradiction, a trap, that constantly invalidates people with disabilities and then tells them to get over their disabilities, be different, erase parts of themselves, look more ‘normal’

#AbleismIs the belief that disabilities are an excuse, born out of laziness or incompetency.

#Ableism says that disabled people are liars and/or criminals. Its baseline asserts that we could work but don’t, and if we are able to work, are scamming government funds and resources if we still have physical or monetary needs. #burdenofproof.

#Ableism locks disabled people up in institutions, presently, in many countries around the world. In Canada, the last known(abusive) institution was shut down in 2009.

#AbleismIs the assumption that everyone wants to be able-bodied,

#AbleismIs the belief that disabled people are less-than.

Systemically, #AbleismIs the structural oppression that legitimizes our poverty, unemployment, isolation, and general lack of well being. #Ableism justifies these inequalities by calling us inefficient, undeserving.

#Ableism glorifies our helpers as saints, while ignoring our names and stories.

#AbleismIs the reason why so many men still ask me if I can have sex.

#AbleismIs the reason those same men ask, “but how?”

#Ableism is this online dating text:

Screenshot 2015-11-10 16.54.55

Right. Because POF is where you find people to climb Mount Everest with.

#Ableism (internalized) tells me that I should not have other friends in wheelchairs, or with disabilities of any kind. It says that I’ve worked so hard to overcome my disability (eye roll), and thus shouldn’t have to associate with other PwDs.

#Ableism (internalized) whispers that I’m too good to date other PwD, because that’s all society expects of me and I better ‘do better’.

#Ableism (internalized) makes me a snob, isolates me from my own community.

#Ableism (internalized) makes me uncomfortable with disclosing my disability to those I’ll never see face-to-face, for fear they’ll start questioning my competency/legitimacy as a person, once discovering that I’m disabled.

#Ableism expects me to talk louder.

#Ableism wants me to learn in a standardized way.

#Ableism makes no time for mental health/sick days.

#AbleismIs the reason I didn’t know what ableism was until I was 24.

And maybe worst of all, #AbleismIs what’s made me think all these negatives are simply, “the cards I’ve been dealt.”

#AbleismIs never going to acknowledge that I was born with less spoons than ablebodied people, and #Ableism will never note that that does not make me less-than, but in fact gives me a greater filter against bullshit and time-wasting.

#AbleismIs the reason the rate of suicide for disabled people is estimated to be much higher than those of the “average” population.

#AbleismIs the reason those suicide stats are so well-hidden.

#AbleismIs the pity-smile from the passerbys at the grocery store.

#AbleismIs hiding my learning differences, because my physical differences are already too much to handle.

#Ableism causes closeted-living.

#Ableism teaches us that ablebodied people’s time is of more value than ours, that their lives matter more than ours, and that we should be grateful we are alive.

#AbleismIs ignoring or invalidating invisible disabilities.

#AbleismIs refusing to believe in the legitimacy of our disabilities.

#Ableism is, “You have brain damage? Well, you seem really smart.”

#AbleismIs the “R-word,” because when you use that word, you dissociate from the humanity of people with intellectual disabilities.

#Ableism says that I don’t understand how my body works.

#Ableism says my body is broken/deformed/tragic/something to gawk over.

#AbleismIs why I felt ugly as soon as I hit puberty.

#AbleismIs why I eventually decided “Fuck that, I’m pretty.”

#Ableism assumes that institutions know my priorities, and what’s best for me.

#AbleismIs responsible for the medicalization and dehumanization of my body.

#Ableism still regularly tells me I’m stupid, not good enough, and should just take what I can get out of life.

#Ableism hurts.

That’s all I have right now. My goal is to make a comprehensive list depicting what ableism looks like for all sorts of people, so contribute if you feel comfortable. Tell me, what does ableism mean to you?

Additions to #AbleismIs From Other PwD:

Jennifer Clayton says: “Ableism is…doctors telling me to find another doctor because they don’t treat people with “multiple problems.”

Ableism treats me like a dumb child, and is surprised I’ve had any accomplishments.

Ableism thinks I should be cured by now, or dead.

Ableism thinks I should apologize.

Ableism can suck it!”

Andrew Morrison-Gurza says: “#ableismis CP Warriors. Why are we fighting our disabilities and not embracing them? “
Point of reference:
 TIFFANY GRACE
Andrew also says: “‪#‎AbleismIS‬: Not knowing how to take things slow or create boundaries, because as PwD, we are rarely given the opportunity to experience consistency.”                                                                                                                                                                               Anne Killpack says: “#ableismis feeling like I have to be polite about not getting basic civil rights others get.

 #ableismis when a sign says dogs are welcome at the cafe that doesn’t let wheelchairs in.”

 Katie Calahan says: “[#ableismis ] When someone aggressively “insists” on “helping” me after I’ve politely refused their un-needed assistance several times! [#ableismis ]When my disabled friends tell me about the things they “can never have.” [Can-never-haves include],  “I’ll never get married” “I’ll never have a family” “I want to (career goal), but I’ll never be able to do that.”                                                                                                                                                                      
Odat Dbd says,: “[#ableismis ]the assumption that just because I don’t “look sick” I must be faking it. Naw man. I’m faking being well.”
Frank says:[#ableismis ] We are disabled not due to lack of our willpower, but, because society refuses to enable us. How can I compete fairly in a job market where 90% of the buildings where I COULD work, are not physically accessible to me?
Cheryl Green says: #AbleismIs the teacher complaining to me that it’s not fair I didn’t tell her I had a disability before enrolling in her class.
#AbleismIs The teachers telling me and the one other disabled student the accommodations they made for us without asking which ones we wanted or needed. And getting defensive when we told them the accommodations they chose for us felt unfair and awkward.
#AbleismIs asking me to wait for the whole rest of the class to get applause at the presentation, and then I can join them at the end.
#AbleismIs My mom reassuring me, “Well, at least you still have your intelligence” and not being able to explain what that meant when I asked her.
Send me your examples of ableism, at williamskristen519@ymail.com. Let me know if you’d like to remain anonymous.
                                                                                                                                                Recently, a group of black women with disabilities released a blog post called, “Black Women on Wheels: 6 Things You Need to Know,” The piece flies flat in the face of ableism, discusses the weight and shape of disability, and how it interacts with race and overall identity. It’s worth checking out if your looking for a little empowerment in light of all this ableism.

Here’s The Ableism We Disguise as Empowerment

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In social justice circles, the phrase, “Take your power” is thrown around like a hot potato, encouraging people who have historically faced oppression to “speak up,” and “take their space.” Most of time, these sayings are meant to allow people ownership of space/time/rights that have been previously taken from them. While born of good intent, a closer look depicts a whole whack of ableism/problematic implications. Here’s why:

  1. It suggest that we’ve been denying our own agency & ability this whole time.Telling someone to take their power implies, oh-so-subtley, that we’ve been neglecting what’s been right in front of us all along. It implies that something about us needs to change, which goes against ideologies behind most social change movements.

It also assumes that power-taking is an option for everyone, which simply isn’t true. People who have experienced life times of trauma or abuse may not know how to take their power–or, might have no interest in doing so, as it is not how they have learned to navigate their lives. We need to allow room for these realities in all SJ movements.

2. It wrecks collectivity. As a kid, I had trouble speaking at an audible level.This meant that I just whispered everything, and most people never caught a damn word. I also didn’t use a wheelchair at school at first, so I frog-hopped everywhere. Combine the two circumstances and you’ll know what Kristen Age 4 was doing with her life: Crawling around Kindergarten class, whispering to kids, and hoping that someone would hear her. Soon enough, the other kids got tired of bending over to  listen, and everyone just started crawling, some whispering with me. No one thought anything of it, until one day we saw my mom standing in the door way of the classroom with what she called “happy-tears” in her eyes. Apparently something special had happened, and it made her cry.

That’s what collectivity looks like. It doesn’t necessarily mean shouting commands from the rooftops. It doesn’t mean taking space, or power. It means adapting, so that a person can be however they want.

Another thing: my whispering gave my excellent hearing, and my dad called me “Big-Little Ears,” for a little while. That wouldn’t have happened if I didn’t get to live in a much quieter world for a few years.

3. It re-triggers. You get why, yeah? It seems absurd sometimes to ask someone who has been dominated or oppressed to take power. In doing so, you’ve become yet another person telling them what to do and how to do it.  Especially in the realm of people with disabilities ( both physical and invisible), who have often gone through life feeling different, not good enough, not normal, and maybe out of control of their own circumstance. These feelings of difference and loss of control can very frequently be related to experiences of violence as well, so the very last thing they probably want to hear is how to act or behave in a more acceptable way.

4. It re-enforces dominance. And by proxy, that we take dominance as the most acceptable form of taking control, negating and excluding all the other ways to do so…..

Angry wheelie out.

Sex Party Stoppers (Reasons Why PwD Might Opt Out of The No Pants Dance)

On a perfect planet, everyone would stop ogling the PwD-friendly sex party and just come already. But things (and people) are hardly ever that easy, and perhaps talking about the reasons that people are unable or unlikely to attend is just as important as the event itself.  Below are a few reasons why PwD might not show up at our gig.

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  1. Vulnerability. Let’s just get the obvious out of the way.Differing levels of nudity can be awkward, because feelings of being exposed and seeing others exposed can be awkward, and make someone feel vulnerable or generally uncomfortable.
  2. Because Good Help is Hard to Find. “Sure, I’d love to help you go a sex party and get naked and possibly have sex with a person you met 10 minutes ago!” is not a sentence commonly uttered by caregivers, friends, or parents (who sometimes double as caregivers). This is a huuuge barrier in PwD being able to attend the party. Not only do us disabled people have to be comfortable with our own vulnerability, but we often have to find an attendant who is also comfortable, open-minded and willing to help. A situational diamond in the rough.
  3. Because Sex Can Be Hard Our culture puts so much emphasis on spontaneity, it hurts. Movies  and porn glorify sex that it so passionate and quick it almost looks entirely accidental (which is in itself, problematic..).   And for many and most of us, disabled or not, sex ain’t like that–but it doesn’t mean we don’t hold the spontaneity standard close to our hearts.

The spontaneity standard can hit some PwD pretty hard–as it often just isn’t possible with the amount of figuring that goes into great sex; and the planning that goes into our lives, generally. Andrew and I term this sex planning “sex-storyboarding,” and as much as I hate it, communicating what works and doesn’t sexually (and expressing that before, during and after sex) is the surest way to a positive sexual experience. Unfortunately, sex-storyboarding requires a lot of pre-requisites, including patience (on the part of both parties), self-awareness of likes/dislikes, position preferences, and ability to communicate these specifics. In short: Sex can be hard.

Add to that the fact that disabled people have been treated as asexual for centuries, and you have a group of people that have not yet been given the chance to explore or understand their sexual fantasies and the like. Due to lack of opportunity, they may not be aware of their sexual desires, or have indeed internalized that they are asexual, PwD may not be able to storyboard their sex, making sex even harder.

5. Because Money Sucks. The big one. A high percentage of PwD live under the poverty line, many on fixed incomes, and even those of us who are privileged enough to work often struggle to make ends meet. There are so many factors that contribute the the systemic oppression that keeps almost all disableds that aren’t Christopher Reeves (RIP) or Stephen Hawking,  broke–I’m not even sure where to start.  Ableism that keeps  us unemployed (“You just wouldn’t get the job done as efficiently in this busy environment…”). Ableism that treats us like thieves for needing help when we can’t work. Ableism that asks us to “prove” we struggle to work and “prove” that we’re disabled–even if our disability is permanent. Ableism that only hires those that drive/ bike/ run.

Lack of finances means so much–maybe it makes us unable to hire attendants. Or travel. Or pay cover. It’s just another sex-party stopper.

6. Lack of Personal Agency Y’know that ableism we just glazed over? It can kill your insides over time. This means that as a PwD, you might often feel out-of-control of your own life, as it can so often be dictated by those more able than, and the systems that govern them (think: medical system, housing system, personal care system). In terms of sex party attendance, this might result in PwD not even realizing or believing that they can actually attend.

In terms of practicality, if you’re a person with a disability that’s been institutionalized at some point (as many of us have), then you might not even be aware of your own ability to access resources (such as attendant care, accessible transit), and you might be limited in the area of personal agency. I was 21 before I learned how the Ottawa buses worked, people. Twenty-fucking-one.

Point is, ableism is such a strong force, that some PwD understandably think that they can’t access certain resources or venues, like a sex party. Because before now, they really truly couldn’t.

7. Safety Sometimes we internalize that we’re vulnerable, because everyone tells us we are. Sometimes we truly are vulnerable. Whether grounded in truth or stereotype, the belief that a sex party puts our safety at risk (even though the party will have safety proctors to prevent anything unwanted…) safety will likely be a factor that keeps many PwD away.

Please, add things I may have missed, my perspective is limited.

My hope is that this play party will be one of many, that this will in fact become more normalized, so that at the very least, people can move on to sensationalizing something else–and disabled people can have access to sex parties, no questions asked.

More Reasons to Have A Sex Party Including PwD

T minus 9 days til the the world ends–er uh, disabled people have a sex party. Never in my twenty some-odd years have I seen so much negativity around sex as I have when it pertains to PwD–and this party (and the coverage around it) is proof of that.

Due to all this shitty, sensationalist, off-the-mark coverage, I’ve written reasons why this party needs to happen. Because we need to take a step back and remember the facts.

Fact 1: Disabled People Are Either Hypersexualized or Infantalized. 

That’s it–as a PwD, you have no other option.People are either fascinated by the fact that you’re having sex, and hypersexualize you into oblivion as a result, or they can’t deal with your sexuality and the humanity that might demand recognition along with it. The coverage of the 2012 paralympics is a sad example of this oversexualization, discussing ideas such as small-stature as a reason for extreme horniness–  as if they are concrete, scientific and somehow acceptable.

The trouble here is that hypersexualization is dehumanizing. It makes PwD into a spectacle. Do I have to spell out why? When we fuck at the paralympics, you best believe its not because we’re hypersexual, or that we’ve lost our minds, or because of the testosterone “whizzing around in [our] bodies,” (what the actual fuck?!)…It’s because we’re human and fucking is more fun than sports.Fuck sports.

On the flip side, you’ve got the infantalization problem.I’ve blogged about this to infinity and back, so I’ll simply say this: I’m 27, and some people are still genuinely shocked to find out I’ve had sex. It breaks too many people’s brains to hear that I’m not only no longer virginly, but that I also enjoy sex (as many humans do…). People just can’t compute that a child like me would indulge in such atrocities.

So much lit has been writ on the infantalization epidemic, Google it if you want more than my personal struggles.

The fact that these two extremes are the only picks for PwD lend to the difficulty we have with seeing disabled people as people. The tendencies to objectify and/or ignore our sexuality has left us (PwD) excluded from proper sex parties, dance parties, high-school proms. We not only need this. Our humanity deserves this.

Fact 2: Exclusion is Real and Really Shitty.

I didn’t go to my high-school prom because it was inaccessible. I only went to one house party in all my 4 years. I am a prime person to pre-drink with, mostly because main events are almost never at accessible venues.

These circumstances would be a lot easier to swallow if they were infrequent. But inaccessibility is an everyday occurrence. This will be the first party to try and counter the commonplace inaccess to parties, party places, and sex and dating spaces.

Fact 3: We Deserve The Chance to Get Rejected

Someone asked me recently if I thought this party might be damaging to disabled people. They mentioned that it might efuck-yes-meme-generator-fuck-yesexacerbate current oppression and rejections, as the nature of social interactions (and sex) is competitive.My response to this was: “The worst thing we can do is protect disabled people from these sorts of things. Disabled people are people, and part of personhood is being hurt.” We have a right to the shitty side of human interaction, because we have a right to social interaction, period. Enter, sex party.

Fact 4: Comparatively, Our Sex Lives Suck

“Sexpert” and Clinical Psychologist Dr. Danielle Sheypuk tells us that PwD have much less sex than our ablie counterparts, even though able bodies report a low sexual satisfaction rate. She then states that even though she [a person with a disability] “is a catch, her Match.com guy is much more likely to date,” and find sexual partners.

Statistically, all signs point to sad when it comes to the sexual frequencies of PwD. We don’t get enough of it, not nearly enough, because most of the population is hesitant to even meet us for coffee. If you don’t believe me, watch Danielle’s talk in the link above.

It’s our time to change the stats. Our time to change the dehumanization. Our time to rock the boat a little. And ladies and folk, we need a sex party to help us do that.

Please Stop Talking About That #Qdoba Restaurant

You’ve seen it; the viral video that shows a Qdoba restaurant fast food employee helping a PwD eat their meal.In case you live in a blissful world where people don’t have social media, here it is:

This video has been trending on-and-off on Twitter and Facebook since this afternoon, and it’s annoying, because the rhetoric around it is all wrong.

Qdoba

News reporters and common folk alike are calling this happening an “act of kindness” and the uploader of the video said the instance was proof “that there are still good people out there.”

I will be that person, to state that this is a very well-accepted form of exploitation of PwD. Many ablebodies are watching the video with butterflies in their stomachs, wiping stray tears from their eyes, as their hearts grow three sizes.

Stop the madness. Wipe your tear. Think about the facts:

– A disabled woman needed to eat.

-This woman made an order at a restaurant.

– She then asked for help eating.

– The guy decided he could assist her, put on gloves, and she ate.

That’s it. Sorry to bore you. Nothing to see here.

As I’ve been the girl to both need help and give others help with eating, I can tell you that it’s nothing to fuss over. As someone who can usually eat without assistance, I can tell you that it sucks when circumstance demands that I need help with it. You know what makes it worse? MAKING A BIG DEAL ABOUT IT, at the expense of my dignity.

Please stop reiterating our over-glorification of human kindness, at the expense of others. It’s  oppressive to those needing help.

Goodnight.

Sexual Consent: What A ‘Yes’ Can Mean For PwD

napo

Relax, consent for PwD is just like consent for all you walkies, with a few additives. The couple extra pieces I will talk about below are equally as important, and rarely discussed. Pay attention, here comes vague references to my lived-experience.

How Consent Is Layered For PwD (And The Complexities of Our ‘Yes’):

Consent is predominately talked about by defining No. No means no, maybe later means no. Sorry, I have to finish my homework means no. But for all our no conversations, the implications of yes are left in the cold. It’s unfortunate, because when PwD say yes to sex,  we’re also saying yes to many other things simultaneously. Here’s a brief starter list of what our yeses are indirectly signing us up for:

Yes, you can see my naked (and probably differently shaped ) body.

Yes, you can watch (and pretend like you’re not watching) how I move.

Yes, you can put me on the bed.

Yes, you can see that my body reacts differently than most to penetration.

Yes, if there was a fire right now, or your boner died and you ran away, I’d be SOL, laying here naked like a bug on its back. Until the end of time.

Regardless of how much you can or cannot do physically, one thing is certain: As a PwD, you are saying yes to tangible vulnerability when consenting to sex. Not the emotional kind that Brene Brown or Elisabeth Gilbert discusses, as if they’ve just become human for the first time. Vulnerability in terms of physical safety. Vulnerability that means,” I’m relying on you to treat me with respect in these intimate moments, but if you don’t, I can’t up-and-leave.” Vulnerability that, during and after sex, means a level of physical dependence. This is important to mention because it’s a big part of our yes. In saying yes, trust in our safety is implicit.

As PwD we’re also consenting to you, our sexual partner, seeing the intimate extent of our embodied difference. This too varies with disability, but could mean anything from having a non-normative body type, to muscle spasms, pain, or differing body mechanics.  It could mean a different way of communicating. It might mean taking off a brace, removing a prosthetic, whatever. And as confused or unsure as you might feel about the level of difference in our ability, we might be just as unsure about showing ourselves to you. (We might also think we’re great and not give two shits how you’re looking at our differences—it really depends on who you’re sleeping with).

The Importance of Acknowledging Power

Fun fact: When you’re with a person with a disability, ablebodiedness=power. In fact, anything that you know about the person you’re sleeping with, is a form of social power. This is why it’s crucial that during sex, a person acknowledges their power. This might sound like a load of whack, but acknowledging power is the first step toward neutralizing it. And doing so can be a simple communication, starting with “Do you want this?” Checking-in is great too. I’d rather be asked a zillion times if I’m turned on/happy/comfortable than not at all. Consent is actually very sexy. It evens out power dynamics, and opens the lines of talk for a funner (it is too a word) time had by all.

Know that as PwD, our Nos are fat with truth, but so too are our yeses. If we want to sleep with you, it’s a risk, and if we’ve said yes, it’s one we’re willing to take. Feel free to add your thoughts on consent as it pertains to disability, if at all.