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Health-LiveI have albinism—AmA

Jul 22nd 2017 by AlbinoAlex • 27 Questions • 3883 Points

Hi, I’m Robb Ryerse. I am running for Congress because I believe that the people of Arkansas's 3rd Congressional District deserve an independent voice in Washington. I will put the needs of people ahead of the desires of the party establishment, corporate lobbyists, and special interest donors. I also want to help restore the Republican party to its historic values.

My wife and I are both ordained ministers, and together, we co-pastor the Vintage Fellowship in Fayetteville, Arkansas, or, as I like to call it: “America’s best kept secret.” We follow in the footsteps of Jesus, doing good works, and opening our arms to differences of opinions. Vintage Fellowship, at its core, is all about care -- care for those less fortunate, care for our community, care for our neighbors, care for our family and care for our planet. Since its inception, our goal has been clear: we welcome all people. LGBT and folks from all backgrounds, creeds and colors. Even skeptics are encouraged to join us. We recently joined a group called OPEN, which is an alliance of progressive-leaning churches that embrace our view of Christianity. We are committed to lending a hand to anyone who needs it including aiding the resettlement of refugees in our district, something our current congressmen tried to shut down.

You may have seen me on Fox News recently. Honestly, we expected it to be pretty rough -- but it ended up being an incredibly positive experience. We were overwhelmed by the outpouring of support we received afterwards from Republicans across the country who were disgusted by the state of politics today.

Check out my website here: Robb2018

This campaign is 100% people-powered. I don’t accept a cent of corporate donations or PAC money -- only individual small donors. If you want to help, you can donate here: Donation Page

Connect with me on social media: Facebook & Twitter

If you're interested in learning more about Brand New Congress, come join us at /r/BrandNewCongress.

PROOF!

Lastly, I want to mention the Summer for Progress. Brand New Congress has teamed up with 19 other progressive organizations to support 8 progressive bills. If you want to join the movement, please sign our petition!

I'll start answering questions at 2 PM CST / 3 PM EST. AMA!

Q:

What do your nipples look like?

A:

As a southern Christian can you explain the current disconnect of the republican party to the actual teachings of Jesus? How can so many evangelicals support the republican party as it is today without appearing to endorse sin and evil deeds? How can you align with a party that seems to do the opposite of what Jesus taught?


Q:

Checks

Light pink?

A:

We all have a tendency to stray from our core beliefs over time. So much of life is about finding and returning to what is most important to us. I can’t speak for all southern Christians just like I can’t speak for all Republicans, but I know in my life the teachings and the example of Jesus have become more and more important. I hate that my party is often known for policies and programs that seem to be in opposition to my understanding of what Jesus taught and the example he set.


Q:

What do my nipples look like?

A:

There should be a separation between church and state. I sincerely hope Mr. Ryerse agrees with that belief.


Q:

Delicious!

A:

Absolutely


Q:

Yum

A:

I live in the district, I'd say good his views are pretty consistent with the local mix of well-meaning, conservative, southern Christians and very liberal, free-thinker types.

edit: autocorrect


Q:

( ͡° ͜ʖ ͡°)

A:

I think so too.


Q:

Do you mostly go out at night because of the sun? And how bad is it driving in the hot bright sun?

A:

How would you fix the student debt crisis in America?


Q:

I can handle sun exposure, just not for very long. During the day I'll just walk quickly and try to stay in the shade.

Thankfully, glass can stop a lot of UV rays, but I try to sit in the middle of the car or on the side opposite the sun anyway.

A:

Great question. My daughter is about to be a freshman in college, so I am grappling with these concerns anew, like many American parents do.

I am a big fan of the kind of tuition-forgiveness programs that allow people to have their student loans forgiven in exchange for service in a way that benefits communities. I think we need to invest in more of these.

I also think we need to make sure we don't get into a mess like this again by providing all Americans with access to college education and technical training.


Q:

Have you tried those sunscreen shirts? They make clothing with sun protection built in

A:

You are one of the only two people endorsed by Brand New Congress that is Republican. Based off of your beliefs and website, you seem to be more Democratic. What makes you call yourself a Republican?

Being a religious man, do you support the separation of church and state?

You talk about border control on your website, specifically increasing it to encourage immigrants to enter our country legally. The Border Patrol Budget (according to americanimmigrationcouncil.org) in 2016 was 3.8 Billion dollars. How do you plan on increasing this budget to allow for your ideas of border control?

You also propose to stop unnecessary wars and to "keep America safe." According to the OMB, Congress allocated $1.11 trillion in discretionary spending in 2015, over 53% of which went to the military. Do you plan on increasing that percentage, and if so which programs will you decrease spending in? Or will you propose raising taxes?

Thank you for trying to fix what has gone wrong in our country. Us little people down here appreciate people like you and all of the people in Brand New Congress. Even knowing that powerful individuals like you, people who may actually be able to make a change, can see and hear us makes me feel a little more optimistic for mine and my child's future. I sincerely hope you and your team can make a change.


Q:

I've heard a lot of good things about UPF clothing, but never actually looked into it. My current outfits work well and I just use sunscreen (or stay inside).

Who wants to go outside when it's 106℉, anyway?

A:

Thanks for the questions.

I am a lifelong Republican who wants to help restore the GOP to its historic values. I might be out of step with some of the current Republican orthodoxy, but I'm very much in line with what the party used to be.

I absolutely support the separation of church and state.

About the border, we need to make sure we are spending that money correctly, not on outdated expensive and impractical ideas like a wall. We should be using the best technology and equipment to secure our border for lower costs. But also the budget is not just for border but is also for actions inside America. If we had a true path to citizenship for the folks already here, we could refocus those enforcement actions and the money attached to the border instead of breaking up families that have been here for years or decades.

I agree with President Eisenhower when he warned us about the military industrial complex. Currently, we outspend the entire world on defense. I think we could probably scale that back, reinvest in other areas, and not see any kind of decrease in our national security.

I don't think of you as "little people." I am just an everyday guy who's gotten involved in this way. We can all make a change if we work together to wrest power away from the party establishments, corporate lobbyists, and special interest groups, and return it where it belongs - with the people.


Q:

Phoenix Arizona native here, I hear you on wanting to stay inside during stupid heat.

A:

How would you fix healthcare in America?


Q:

It's going to be 103℉, my parents don't like using the A/C and it frequently heats up to 92℉ indoors. I'm fucking bathing in my own sweat and they're perfectly fine :(

A:

Maybe the most pressing issue in politics today. Great question. Let's fix it once and for all. Let's pass Medicare for All. I believe there are good moral and economic reasons to support a system that makes sure that all Americans have health coverage. I think utilizing a system like Medicare is the way to get this done. Recent polls show that the majority of Americans now agree that Medicare for All is the way to go.


Q:

Your parents might be robots.

A:

Man, I have never voted for a Republican before (at the congressional level or above, anyway). But I would vote for you in a heartbeat.


Q:

Nah, they just grew up in southwest Mexico where it gets hot and humid as fuck in the summers. ZERO places had A/C, even to this day, so of course they can live without it.

A:

Thanks so much!


Q:

Yeah get those shirts, they were a game changer for me. They are also really cool and take the sweat off !

A:

What historical figure do you style yourself after?


Q:

Really? I would have thought long sleeves in the summer would be a death sentence :P

A:

Not sure I'd say I style myself after him, but I am always moved by the story of Dietrich Bonhoeffer. He was a German theologian and pastor who was one of the very few church leaders to speak out against the Nazis. He was arrested for being a part of a plot to assassinate Hitler and died in a concentration camp just a few days before it was liberated. A true hero.


Q:

Is your penis slightly darker than the rest of your body?

A:

Mr. Ryerse -- what is your favorite video game?


Q:

Checks

Yes.

A:

Mario Kart


Q:

Proof or it's not true.

... did I just ask to see his penis?

A:

Thank you so much for running for Congress! When I tell friends and family about you, they are hopeful, but concerned about what will happen to honest, genuine people who manage to get elected. When confronted with intense pressure to vote along party lines, how will you be able to stand strong and put the needs of people first?


A:

Great question that I get asked a lot.

The most corrupting thing our political system is the money. Elected officials go to Washington and have to do what their corporate donors say or else they risk losing that money.

A people-powered campaign like mine, and other Brand New Congress candidates, means that when we go to DC, we have just one priority - serving the people. I hope this will help us resist the corrupting force of it all.

Plus, we'll going together as a post-partisan team. We can help each other do what the people sent us there to do.


Q:

Mine too, does my dick have albinism?

A:

What kind of tax reform would you consider "meaningful"? Do you favor extreme changes to the tax code (such as a flat tax, federal VAT, land value tax, replacing/eliminating the corporate tax, negative income tax, or one of any number of significant transformations of current tax policy that have been suggested on various points across the political spectrum recently) or are you merely interested in making adjustments to existing taxes, such as raising (or lowering) the burden on the top income tax brackets?


Q:

I don't know, let's compare and find out.

A:

To me, "meaningful" tax reform addresses the biggest issue in our tax code currently: namely, that big corporations have huge loopholes that allow them to get away with paying virtually no taxes while the burden of our corporate tax is shouldered by small businesses. This has got to change!


Q:

Is any one else in your family Albino? Or is it just something completely random?

A:

Do you side with the republican party out of principle or political necessity? Please explain.


Q:

I have a cousin in Mexico who has albinism. She's on my mother's side, can't remember where on the tree. It's not necessarily completely random because it's a genetic disorder, but the odds of finding another carrier are so slim.

A:

I am a lifelong Republican who decided that I would stay in my party and fight for needed change. Joe Scarborough recently made news for leaving the GOP. I totally understand his decision. But I want to work for progress within a party that's been co-opted. There are more independent-minded Republicans than we all realize. We can make a difference.


Q:

Hopefully low on the tree so she can stay in the shade.

A:

Hey Robb. What's the biggest challenge you're facing as an independent Republican running with BNC in this race? What do you think is the best way to get over that challenge?


Q:

Not sure why you got downvoted, that was pretty funny.

A:

Hey Sarah! Everyone should check out https://brandnewcongress.org/Candidates/sarah-smith. She's will make a great representative of the people of Washington state.

The biggest challenge for me is fundraising in the face of a well-supported incumbent. Congressman Womack is bought and paid for by his corporate donors. Our campaign is people-powered, as yours is. We're not accepting special interest or corporate money, which means we've got to rely on the support of everyday of Americans.

That's the challenge - but the benefit is so important - when we're elected, we'll be beholden to serve the people who supported us, not corporate lobbyists. And that will make all the difference!

Vote Sarah Smith in Washington 9!


Q:

So would any children you have be Albino?

A:

"Bathroom bills" (bills aimed at requiring trans individuals to use the bathroom of their assigned gender rather than the one they identify with) are pretty popular in America right now. What are your views on these bills?


Q:

Depends on whether or not my partner is a carrier for the specific type of OCA I have.

A:

I think people ought to be allowed to live their lives in peace and quiet. I think the government needs to get out of our bedrooms and bathrooms. I stand with my trans friends who simply want to get on with their lives.

Frankly, I find it galling that my Republican friends who like to talk about small government don't see their own hypocrisy when they push intrusive bills like the "bathroom bills."


Q:

Do you ever mess with people? Like dress up in a black robe and stand in a friend's window at night.

A:

If a bill comes up that is not constitutionally sound but not voting for it may go against one of your personal principles as a Christian what will you do?

Edit to be specific:

Let's say x is legal per the Supreme Court. X is also seen by many Christians as a sin. Someone puts in a bill to block x, likely knowing it will be overturned through appeals but getting to look like they are doing something. Do you vote to block because of your religion or vote against because it's against the Constitution?


Q:

I should totally do that. Best I can do is sneak up on people.

A:

The role of a Congressperson is to represent the people of their district, not impose their personal beliefs or morality on everyone else. I'm committed to being the independent voice the people of AR-3 need.


Q:

Hell yeah. Glad ya didn't take it in an offensive context. I just know if I was albino or had a friend that was we would do some pranks. Prolly been asked already, but what are some advantages of albinism?

A:

Hello Mr. Ryerse, What legislation would you support in regard to campaign finance reform? Would you like to see federal disclosure legislation, new Supreme Court decisions, or a Constitutional Amendment? Also, would you support legislation at the State level in regard to this issue?


Q:

There are none that come with albinism by itself, it is a genetic disorder after all. But I've had a lot of amazing experiences that I would have never had if I didn't have albinism.

A:

We need to get the corrupting influence of money out of politics. So many other issues will never be able to be addressed until this one is because of the power of corporate donors.

I'm not taking PAC money or corporate donations. I think that's the way it ought to be so that our elected officials end up serving the people rather than their corporate donors.

Yes, I would support states addressing this issue, but I also think it will require a federal solution - probably coming from the courts since our legislators are bought and paid for by their corporate donors.


Q:

My father had albinism. Unfortunately he's passed away now. I'm not albino myself but I do carry the gene, so there is a possibility I could have children with albinism. Given your own childhood experience, what advice would you give a parent of a child with albinism to help their child to cope both with the physical conditions as well as socially (making friends, dealing with bullying, etc).

How was your own childhood?

A:

How does your wife feel about you running for Congress? How did you two meet?


Q:

Sorry to hear that, I'm sure he was a great guy.

There are books and meetings and support groups for parents of children with albinism. Not being a parent myself I'm not the best to ask, but definitely listen. Listen to their needs, stories. Make sure they have what they need and that they wear sunscreen! Take them to local meet ups and the national conferences. Basically, anything to boost confidence.

A:

We met in college in PA. Our 21st anniversary is right around the corner. She's my whole life.

And ... all of this was her idea. She first learned of Brand New Congress and introduced me to it. If she weren't 100% in, I wouldn't be doing this.


Q:

How quickly do you burn without sunscreen? Do you have to wear it every day?

A:

What is your stance on abortion? Are you pro-life and antiabortion?


Q:

I don't have concrete numbers because obviously I try to avoid getting sunburned. I'd say about 45 minutes of continuous sun exposure. Keep in mind, I define a sunburn as red, hot skin that's painful to the touch and peels after a few days.

A:

I am prolife, but I think the best way to reduce the number of abortions is through access to healthcare and education. I think the focus of the prolife movement ought to be more focused on these things that have actually worked at reducing abortions rather than overturning Roe.


Q:

Do people treat you differently when you go out ? Are you in a relationship ?

A:

What are the most important concerns for your district? How will you address these concerns?


Q:

I personally don't notice it because I can't see well enough to, but I'm told a lot of people stare. With that said, no one actively treats me differently.

No.

A:

The two biggest ones right now are:

Healthcare - we need to pass Medicare for All.

Money in politics - we need leaders who aren't bought and paid for by corporate donors who will actually serve the people.


Q:

Is there a secret league of albinos, do you hide deep beneath the earth to shield yourself from the sun, and do you plot to steal my melanin?

A:

What's your favorite book? Or second-fav, if the Bible is your first ;-)


Q:

Yes, yes, and yes.

A:

That's a tough one. Can I name several?

A New Kind of Christianity - Brian McLaren Ragamuffin Gospel - Brennan Manning How the Irish Saved Civilization - Thomas Cahill What's So Amazing About Grace - Philip Yancey Little Green Men - Christopher Buckley

... and that's just scratching the surface. Too many to name.


Q:

Dear god

A:

Who is someone who inspires you?


Q: Fear me!
A:

I've said for a long time that when I grow up, I want to be like Brian McLaren. Brian is a Christian pastor and author. He is wise and insightful. He's willing to evolve and change. But what I find most inspiring is that he is just so very gracious and kind to people who disagree with him. I've had the honor of meeting him personally, and it only enhanced my opinion of him. I love me some Brian McLaren.


Q:

I, for one, welcome our albino overlords

A:

What is your favorite brand of beer?


Q:

You will be rewarded for your loyalty with a fruit basket :)

A:

Core - brewed right here in Springdale Arkansas


Q:

And chocolate ??

A:

Do you support spinning Cyber and Space Command off into their own uniformed services?


Q:

Yeah, but it's Hershey's. Cadbury/Kinder is reserved for the actual albinos.

A:

Hmmm. I had never thought of that before. I'd need to do some more research because I honestly don't know off the top of my head.


Q:

Do people with albinism take Lutein as a remedy for vision impairment?

Lutein is a pigment found in the eye. It is also found in plants, and is available as a supplement, usually for macular degeneration.

A:

I have to admit, I'm rather skeptical of placing another bible belt politician in charge of things in the state that should be separated from church. Furthermore, it would be extremely hard for you to gain votes from other Christians who have more classic (although racist) values of the South. How do you plan to overcome the clear racism from your state regarding LGBTQ communities as well as people of different backgrounds and skin color?


Q:

There was actually a study at Johns Hopkins that had people with albinism taking lutein and zeaxanthin daily to see if it would improve vision. I have no idea what the status of the study is because the researchers never return my emails/calls, but we all thought it was interesting. Considering that these are OTC dietary supplements, I could just take them myself, but I'd really like to see the study happen and the results.

A:

Fair points.

I'm not a traditional politician, and I haven't been a traditional pastor either. Here's one of the things I've learned over the years at our church, Vintage Fellowship: when people from different backgrounds and perspectives come together to listen to each other and learn from each, that's when love happens. I think our political system needs to learn this same lesson.

I'm going to be honest with the people of my district about what I believe, about LGBTQ protections and more. I think people will respect and respond well to someone being straightforward with them.


Q:

I believe they have to publish the results on clinicaltrials.gov.

A:

You are a pastor who wants to follow Jesus's teachings. Now I am not a religious person but I really don't where Jesus said let the Romans Tax us and redistribute the economy around. Rather he said we should give to each other. What is great is that you are doing voluntary charity around the country and I have no problem with that but what about the fact you will now force others to do your world view?


Q:

That's if the researchers actually bother to go back and do so :P

A:

Jesus' most famous statement on taxes was "give to Caesar what is Caesar's." In other words, pay your taxes.

And you're right, Jesus did not let any of us off the hook of personal responsibility to one another because the government is taking care of it.

I don't see any kind of conflict between having a just and generous society (ie. government) and being just and generous people on a personal, individual level.


Q:

I'm pretty sure they are required by law. But studies last years and then they have the statistical analysis and review for publication, etc.

A:

Where do you get your news?

How will u resist blindly falling for the often unverified claims of the establishment (Iraq has WMDs and the like)?

Do you support getting rid of voting machines?

What do you think of Ranked Choice Voting?


Q:

That's interesting. This study was completed like three years ago, I have the research paper, but it says no results posted.

Thankfully, if worse comes to worse I have access to ScienceDirect and all those research search engines so I can find it there.

A:

I think one of the biggest problems in our current system is that so many people stay within their own echo chamber. So, I intentionally read Drudge, FoxNews, HuffPost, and CNN everyday. I also get a lot of my news on Twitter.

Since my campaign is about People>Party, my loyalty will be to my voters not the establishment. Not to mention ... I'm a naturally skeptical person.

Not sure on the voting machines. I get that we're worried about hacking and interference, but I tend to be someone who wants to see us moving forward with innovation and technology.

I think Ranked Choice Voting is a really interesting idea that needs to be studied. I'm not opposed to it.


Q:

do you have a special cell phone or use apps designed for low vision or specific settings on computers?

A:

Not sure on the voting machines. I get that we're worried about hacking and interference, but I tend to be someone who wants to see us moving forward with innovation and technology.

I recommend watching the HBO documentary "Hacking Democracy"


Q:

Brighter and Bigger is a godsend! I also use the native zoom functions in both iOS and macOS. All the best mapping and transit apps, etc. A lot of it is just taking a picture of what I want to see and zooming in :P

A:

I'll check it out. Thanks.


Q:

With said, how bad is your eyesight? is you prescription eye glasses really strong? or do they not do much? is it to the point where you have had to learn braille(yes i had to google how to spell that)?

A:

The other reply to your question absolutely nailed it. If you want a more thorough answer, this video does a fantastic job explaining what people with albinism see, it's targeted at those who don't have albinism.

I don't know my glasses prescription by heart or what constitutes a "strong" rx, but my vision isn't bad enough to require me to learn braille, though it's a good skill to have.


Q:

Your name is latino / Spanish. Do the gente have nicknames for you? Besides the obvious blanquito?

A:

Guero (I can't spell in Spanish to save my fucking life) is my grandmother's de facto name for me.


Q:

Does Albinism make it harder for you to meet girls? If so, what were your obstacles?

A:

This is a tough question to answer. In the dating world, looks matter. No one wants to admit that, but it's true. By being unattractive, you're automatically at a disadvantage. Fewer glances, fewer swipes, fewer numbers. It's just a fact.

However, when someone is willing to overlook your looks, personality has to shine. Looks may be the first impression but personality seals the deal. I haven't really had too many chances for personality to shine, but I also don't really put myself out there.


Q:

What about the flip side...how would you feel if someone was actually strongly attracted to you in part because of your albinism? Like, didn't just see past it, but thought it was a beautiful and attractive thing?

I ask because I had an off-again/on-again relationship with a person with albinism in college who really struggled with how they felt about their albinism. But, I was actually really attracted and thought it was beautiful. It wasn't that I "saw past" the albinism...I looked right at it and felt desire. I don't think it's fetishizing because we had some real personal and intimate connections in general, but the looks definitely did something for me.

I kept mostly quiet about it because I knew this person wasn't fully comfortable with it, but I've always wondered if it was because of that person's internal struggles with self image or if it really was weird and awkward for me to actually find the albinism particularly attractive.

So, if a woman basically found your albinism to be attractive and beautiful, and you knew that your unusual looks were a big part of what attracted her to you in the first place, would you be weirded out by that or would you be cool with it (assuming you were mutually attracted)?

A:

In the end personality is what matters so I mean as long as we had chemistry, doesn't hurt that they also found me insanely attractive for some reason.

I knew this girl with albinism who tried so hard to cover up. She got spray trans and dyed her hair and wore plenty of make up. She eventually confided in me that she was bullied a lot for having albinism and now tries to conceal it and HATES when anyone guesses she has albinism. It's like this ugly scar that won't go away.

Now personally, I thought she was insanely attractive when she was just herself. The spray tan made her look like a carrot and the odd silver her hair eventually turned into was just weird. But many people have problems coming to terms with the condition, and that's part of why I'm glad there's research for a cure, but that's a different discussion.


Q:

Have you seen the documentary "In the Shadow of the Sun" (2012) about people with albinism in Tanzania?

Highly recommended!

A:

I don't think so, though I'm familiar with the situation in Tanzania.

Definitely looking it up once this is over :)


Q:

Do you have eyesight issues? My nephew has ocular albinism. He is only 2 but has been wearing glasses for a year and has the darting eyeball thingy.

A:

Yes I do, very similar to that.


Q:

What kinds of music do you like? Favourite artists? I just want to talk to someone, man.

A:

Pop mainly, wide variety of artists. Colbie Caillat and Ingrid Michaelson are some of my favourites.

What about you?


Q:

I'll have to check them out! I've been a hiphop guy pretty much my whole life but I'm trying to get into some new genres and don't know where to start

A:

What do you normally listen to?


Q:

What other illnesses/diseases (if any) are you predisposed to as a result of your condition?

Other than sunburn.

A:

Skin cancer after sufficient sunburns, but albinism doesn't like compromise immune systems or anything like that.

Prognosis is good, and the disorder is stable through to late adulthood, assuming proper sun protection.


Q:

Hey Alex! I help run a roleplaying group (Game of Thrones themed) where people play families across generations, and one of the requirements for creating new characters is rolling traits for them. One of the traits you can get is 'genetic disorder'. Inevitably if someone hits this, they often pick one of two disorders- either albinism or heterochromia. The reason for this, it seems, is that these are thought of as 'cool' and people believe they wouldn't really impact the character's life or ability to function day to day. When they write these characters later, there's no mention of struggles they go through because of their disorder- it's just treated like a minor detail that only affects their appearance, with no downsides or deeper impact.

My question, I guess, is what advice you could give to people trying to write from the perspective of a character with albinism and any recommendation you have for how they could more realistically and sensitively portray them. If you lived in the medieval era, before vision could be corrected and before the cause of albinism was understood, what challenges do you think you'd face as a result of albinism?

A:

That sounds really really cool! I've never been into Game of Thrones but I love that people get that much into it.

We get approached by authors on occasion asking us to read their novels to make sure they have an accurate portrayal of a character with albinism. It's tricky because you could read every scrap of information out there, but you can never really understand what it's like. I can read stories and research articles and self-help books on depression until my eyes bleed, but I still won't truly understand what it's like to have it.

I would advise reading basic medical literature on albinism and reading through personal stories (and one of my 18 AmAs). There are a few documentaries of people with albinism, the True Life one did a good job IMO.

For medieval era, glasses actually wouldn't be much a problem. Many people with albinism can get by without glasses. But anything that requires coordination or depth perception like sports or fighting would be a problem. Also being outside for long periods of time would surely result in a sunburn.


Q:

What is love?

A:

Baby don't hurt me!


Q:

Is your butthole naturally bleached?

A:

I don't know, I can't see it.


Q:

If only there was a way to see your butthole...

A:

Do you volunteer as tribute?


Q:

Send me a PM mate...

( ͡° ͜ʖ ͡°)

A:

Giggity!


Q:

OP will surely deliver, let's just wait.

Also, are your bones albino?

A:

Here you go.

Do bones even have pigment?


Q:

Do you feel more privledged being extra white?

A:

Sure.


Q:

Thanks for doing this! I didn't realize I had so many questions, so sorry for the list:

  • What's the worst animosity you've encountered as a n albino person with albinism?

  • Is it cool for pigmented folks to use the term "albino" or is there a preferred nomenclature?

  • Have you ever travelled to one of the countries where albino people with albinism are persecuted and even hunted for alt-medicine/witchdoctor placebo cure-alls, like Tanzania, or other places I recall reading about in the news?

  • Do you ever freckle at all?

  • Have you ever found a crumb or speck of dust on your skin and thought it was a freckle for a minute, throwing your life into a tailspin of identity crisis?

  • Is there any connection between albinism and gingerism?

  • Do you/are you hoping to have children with albinism, or are you concerned about passing on the trait at all?

  • What's the stupidest question a pigmented person has asked you about albinism (or in general)?

  • What are some things you wish more people knew about albinism?

A:

What's the worst animosity you've encountered as an albino?

General insults and teasing tend to hit a little harder than they should. It's very rare for people to point out my albinism, much less ostracize me for it.

Is it cool for pigmented folks to use the term "albino" or is there a preferred nomenclature?

It depends on who you're talking to. In many circles, "albino" has a derogatory connotation similar to "midget." Some people will tear your head off for using it while others will use it right alongside you. In Albinism InSight we use "person with albinism" and so I'm just used to that by now (and I avoid pissing people off). But personally, I'm totally cool with "albino."

Have you ever travelled to one of the countries where albino people are persecuted and even hunted for alt-medicine/witchdoctor placebo cure-alls, like Tanzania, or other places I recall reading about in the news?

Not yet, but I'd like to sometime next year. I have met people from those countries, though.

Do you ever freckle at all?

I don't think so? Those red spots are either freckles, razor burn, or acne!

Have you ever found a crumb or speck of dust on your skin and thought it was a freckle for a minute, throwing your life into a tailspin of identity crisis?

Some chocolate melted on my palm last night and I thought I'd developed a dark spot and my AmA career was over. Then I washed my hands. Phew!

Is there any connection between albinism and gingerism?

That's a good question. They both involve low levels of pigmentation, but I don't think there are genetic links.

Do you/are you hoping to have children with albinism, or are you concerned about passing on the trait at all?

That's always been a "we'll cross that bridge when we come to it" decision. There are pros and cons to having children with albinism. Personally I wouldn't be concerned nor mind having children with albinism, but there are other factors in play.

What's the stupidest question a pigmented person has asked you about albinism (or in general)?

During the Twilight craze, my ex-girlfriend asked if I could see myself in the mirror. I've always had people swear up and down that I don't have albinism because I don't have red eyes.

What are some things you wish more people knew about albinism?

The quite profound visual impairment that is associated with it.


Q:

The quite profound visual impairment that is associated with it.

So... you can't see yourself in the mirror then?

A:

Clever :)


Q:

!silver

A:

Is shiny a colour?


Q:

Is mayonnaise an instrument?

A:

Is psychology a science?


Q:

Is England a City?

A:

Isn't it a country? In a commonwealth? That used to be part of the EU?


Q:

U are the BRO

A:

So are you!


Q:

woo! Thank you! I never knew there was associated vision impairment until today, but it makes me wonder about the involvement of pigment in eye development, and it's sending me down a wikipedia rabbit hole at the moment. I've also never met a person with albinism before, so I really appreciate all the answers.

A:

Lucky for you, even the best researchers out there still do not understand the relationship between pigment and vision.

If you get a chance, look into the levodopa and nitisinone clinical drug trials.


Q:

What color is your poop?

A:

Brown.


Q:

Do your eyes twitch back and forth? Can you tell when it's happening and what dose it feel like? Does it effect your vision?

A:

Yes, it's called nystagmus. I don't notice it and it doesn't affect vision in the way you would think. There is an eye condition where your visual field moves as your eyes move—can't remember the name but it starts with an o. Anyway, I can be looking straight ahead at you the entire time while my eyes freak out.

However, we don't know what affect nystagmus has on general visual acuity.


Q:

Interesting thank you for sharing

A:

Thanks for asking :)


Q:

I had a coworker named Alex that also had albinism

A:

I've met two other people named Alex who have albinism. There seems to be a trend going here.


Q:

Did you ever dye your hair?

A:

Not actively, but I've always wanted to.


Q:

I'm gonna piggyback on this one too!

Does hair dye act any different with albinism? Like does the dye stick better/worse? I imagine it doesn't, but was always curious.

And just something I've always wanted to ask: whats the general term accepted for someone with albinism? I've heard people say "albino" can be offensive and prefer 'albinistic', but how do you feel?

A:

That's a good question that I've always wanted the answer to. The general consensus seems to be that the only difference is that people with albinism do not have to bleach their hair before getting it dyed. Hair dye may made a little faster but overall permanent hair dye will be permanent. Keep in mind this is based off Reddit and a couple friends—I've yet to survey lots of people with albinism but I hope to in the future.

It depends on who you're talking to. Organizations tend to use "person with albinism" or "people with albinism," and that's what we use in Albinism InSight. "Albino" tends to have a derogatory connotation similar to "midget" so a lot of people don't like it. I don't mind it, but I know people who will definitely give you shit for calling them albino.


Q:

To piggy back, ever spray tan?

A:

Never, though I totally should.


Q:

You might want to try dying your eyebrows just for fun. It would make a huge difference in your appearance.

Not saying they look bad (I like them) but people underestimate how big of a difference eyebrows make to how we look.

A:

When people dye their hair, do they dye their eyebrows as well? From what I've seen, a lot of people don't.


Q:

Some do, but hair dye can be really dangerous to get in your eyes, so I'd talk to a stylist for tips/recommendations if you want to give it a shot. There are some that are safer. Before that, you could totally try mascara (which comes in a wide variety of colors sometimes) on them. Or powder/pencils. Just to see what it would look like. :)

A:

Can I just shave my eyebrows and pencil them in?


Q:

Have you ever dyed your hair? You'd look like a pretty basic white dude if you did imo.

A:

Never, but I've always wanted to!


Q:

Hey, I have vitiligo which is an auto immune disease where pigmentation, melanin, in my body gets attacked and I have white patches around my body. My case isn't that bad but there are people with full fledged vitiligo to the extent people call them "albino".

Luckily enough my vitiligo has not gotten worse, I still have people look and stare at my spots and it does not feel good. What's it like on a day to day basis when people constantly stare an look at you based on your appearance? How do you deal with it?

A:

Thanks to my terrible vision, I don't actually see people staring at me. Like, I'm too blind to tell where their eyes are looking. It's only with little kids that I can tell, because they make it SUPER obvious that they're staring. But to me, it's just because they're curious.

Think about Abbey & Brittany Hensel. If you saw them walking down the street, you'd stare. But not in an "OMG mutant freaks" way, more of a "well you don't see that every day" because, frankly, you don't. Maybe people who stare at you aren't disgusted or frightened, but curious. I know I would be.


Q:

Will eating you provide me with magical powers?

A:

Yea, but only on Thursdays.


Q:

Wait, do I have to eat you on Thursday and I have powers forever, or can I eat you anytime and get powers only on Thursday?

A:

This guy reads the fine print.


Q:

Ever thought you were colorblind instead of an albino?

A:

Never.

But let's go deeper. How do you really know that your pink is my pink? How are we sure that we all perceive colours the same way?


Q:

I think about that often and try to imagine if my blue was someone else's green or whatever. Deeeeeeeep.

A:

You know how at the eye doctor they make you like arrange these squares by shades of colour? Say going from blue to green? How can they do that if we aren't sure we all perceive colours the same?!


Q:

Actually i read an article a while ago that said something along the lines of - the color scale and order itself would be the same for everyone, like roygbiv would still be in that order, because the colors are only our perception of the different wavelengths, red being longer and decreasing through violet.. but out perception of the wavelengths could just look different in our brains...? I dont know enough about this shit not to sound like an idiot talking about it lol

But ive never had to do that at the eye dr. Im nearsighted, have an astigmatism, and bad night vision, but never had my color perception tested

A:

That makes sense, and yeah the basic colours are pretty easy.

When I did a clinical trial, I had to arrange 100 colours in 20 piece segments just like this. Blue to green, pink to purple, etc. There actually was a "right" way to do it, in that they actually had a numbered order. They told me that even the office staff couldn't get it 100% right, and they had perfect vision!


Q:

Do you have reddish eyes as well? Most of albinism person i hAve seen hAd this reddish colors in their eyes..

A:

That's weird, but explainable. My eyes are this weird mix of colours, medically documented as "hazel." Most people with albinism have blue eyes. The red effect stems from light reflecting off the blood vessels in the back of the retina. Most people have black/brown pupils because the pigment in their retinas absorbs that light, we don't have pigment in our retinas. But that's under specific lighting, hence the red eye effect in photography. Under most circumstances, a person with albinism will appear to have blue eyes.


Q:

Did you ever stop chasing Tom Hanks ?

A:

Found out he was in a cargo plane crash and never found, so I stopped trying.

Though someone else told me he was captured by Somali pirates. That guy will do anything to get away from me!


Q:

Since I have to ask you a question... Are you wearing that shirt that says "keep out of direct sunlight" to be humorous? (I love how you're wearing that though, it's great)

A:

Absolutely, I hope everyone who sees it gets the joke.


Q:
  1. Do spectacles or contacts correct your vision at all?

  2. Would you consider just for one day getting a light spray tan, colour your hair, colour you eyebrows and wear colored contacts just to fuck with your family and friends? "Hey I found a cure!"

  3. If you didn't have albinism, what colour would you be?

A:

Do spectacles or contacts correct your vision at all?

There's some slight correction, but nowhere near perfect.

Would you consider just for one day getting a light spray tan, colour your hair, colour you eyebrows and wear colored contacts just to fuck with your family and friends? "Hey I found a cure!"

I would definitely do it for fun.

If you didn't have albinism, what colour would you be?

Brown?


Q:

Can you get a tan at say a tanning salon? Or is albinism "in the skin" as to not tan?

A:

I've never tried a tanning salon, but they work in much the same way regular sun exposure does.

In general people with albinism do develop some pigment and some may even have skin that tans slightly or freckles/moles that tan. I've noticed slight tan lines when wearing bracelets or a watch. We just can't sunbathe for hours without worrying about it, we'd sunburn quite quickly.


Q:

Can you control electricity? Also does Jeff Goldblum know you're here?

A:

Yes and yes.