Accessibility and Health Tech (or tech accessibility)

[MissAutumn]

That's good to hear that it's working. Long may it continue to do so. I can imagine it is, especially with medical treatment always changing and improving.

I miss working with him. He was really intelligent and a friendly guy. He went on to work for the charity full time.

I agree. I do feel that people's mindsets are slowly changing. Still a long way to go though.

That's a good example of the abled trying to "fix" the deaf community instead of trying to be more inclusive. I had no idea CIs could destroy residual natural hearing.

[galled]

So many incredible things I'm learning in this thread already. Vivianne, I'm heart-broken to hear about your prognosis.

I mentioned mind reading tech in the other thread. It doesn't require any kind of implant and from the sounds of it, it'll be included in phones in the future as an additional feature like heart rate monitors, air quality detectors, etc., whether you want them or not. It seems one of the biggest issues is the privacy/fear factor which may derail the whole thing (although the government spy agencies will continue to go full on I imagine).

Here's IBM original announcement:
https://www.ibm.com/blogs/research/2011 ... e-fiction/

What the possibilities are:
https://www.computerworld.com/article/3 ... think.html

Where the state of things are as of August 2019:
https://www.fastcompany.com/90388440/mi ... -you-think

++++

As an aside, I saw this video on School of Life entitled What Is The Secret Of Happiness? | The School of Jessica Kellgren-Fozard and I thought of you.

Jessica has a nerve disorder HNPP (Hereditary neuropathy with liability to pressure palsies https://rarediseases.info.nih.gov/disea ... re-palsies), autoimmune disorder MCTD (Mixed connective tissue disease https://rarediseases.info.nih.gov/disea ... ue-disease), and is deaf and partially visually impared.

I know you said watching videos is difficult, but it plays well/can be understood as just audio
https://www.youtube.com/watch?v=sBSwJ6HOBG4

She is a pretty amazing person (as we are finding out that you are as well!!). Jessica's gift for laying out what's important to achieving happiness is quite helpful and I encourage everyone to have a look/listen in any case.

[Vivianne]

I wasn’t aware of the advances in brain-computer interfaces!

I did come across an article on neuroethics.
https://www.vox.com/2019/8/30/20835137/ ... euroethics

One of the things that bothers me about this, and most other tech, is the overwhelming effort to mainstream and tailor to the majority when there are populations it could dramatically better the lives of that may go ignored. The articles you posted mostly focus on the benefits for able people with brief nods to benefits for the disabled.

It may not be completely fair, but I’ve come to view communities and societies by how they treat their poorest and most marginalized members. Tech, increasingly, seems to widen the divide.

—-

Jessica is so positive! She’s amazing! I have never heard of HNPP or MCTD, but they sound very difficult to live with.

I’m completely deaf, but I did enjoy the visuals! They’re happiness-inducing.

I have neurofibromatosis type 2. https://rarediseases.org/rare-diseases/ ... matosis-2/ I’m not realistically able to live independently, but I have clarity of thought, and that’s enough.

[galled]

I'm sure the tech will be helpful to everyone and tweaked for specifics. It's understandable to highlight the mainstream in these kinds of releases and articles (investment and reader appeal), but I don't think that will exclude or lessen other advancement pushes. I'll search for accessibility-centered mind reading tech.

I didn't know you're completely deaf. I hope you clicked the closed captioning button to get the message of the whole thing.

Yes, the visuals are very cheerful!

Thanks for sharing. Off to read up more...

[Vivianne]

I just concern myself with and advocate for minorities, haha. I have a lot of paranoia.

A few years back I started having major dryness problems in my bad eye. Static text is fine, but trying to focus and read changing text causes dryness for some reason, especially when the text is small. I just avoid reading captions as a preventative measure.

[galled]

You can change the speed of playback on youtube. Don't know how difficult it would be, but pause/play might help too.

[Vivianne]

Hm, I’ll try to figure out how on mobile. I think there may also be a way to snag the entire transcript.

[Lemon Cheesecake]

I'm trying to look at everyone's links...that is a lot to try to understand on the definition of the disease and kind of scary that it can just randomly mutate. It sounds like surgical removal can sometimes be effective?

Jessica's message was really inspiring...whether you are disabled or not (after all a large majority of us are "emotionally disabled and need a reminder to focus on the simple joys in life).

[Vivianne]

Lemon - it depends on the purpose of surgery and how you define effective. For example, most of us have surgery to remove an acoustic neuroma causing hearing loss, but the surgery itself causes deafness.

[Lemon Cheesecake]

ouch, side effects may not be worth the risk then? Does leaving the tumors ...not removing... result in any future complications that out weigh the side effects? I really am clueless..but I like to try to understand what people are going through...hope you don't mind me asking! The more I learn about your challenges the more I am in awe of how you are conquering them!

[Vivianne]

Tumors that become too large can cause paralysis or brain problems. A few people had to have tumors removed because they were too close to the brainstem.

Also, tumors that are too large can make surgery or radiation unsafe. Drug/chemotherapy trials are really mixed and have side effects.

Haha, looking at this from an outsider’s perspective is actually really enlightening!

[galled]

I found out that youtube allows you to get a transcript of videos. Just click the 3 dots at the bottom and select Open Transcript. I copied Jennifer's video into a spoiler below.

[+] SPOILER

00:03
NARRATOR: This is Walter.
00:06
This is Walter's human, Jessica.
00:09
Hello.
00:10
NARRATOR: This is Jessica's fridge.
00:13
And this is a film about happiness.
00:24
The School of Life is sending some of YouTube's most popular creators
00:27
on a series of field trips to explore
00:30
some of philosophy's most intriguing ideas.
00:35
This time, Jessica Kellgren-Fozard
00:37
a content creator with more subscribers
00:39
than the population of Iceland,
00:40
the second-happiest nation on Earth,
00:42
is finding out what most of us
00:44
are getting wrong about happiness.
00:46
[KISSES]
00:47
As long as humans have traveled the Earth,
00:49
people have been motivated by one thing above all.
00:53
-The desire to be happy. -[LAUGHTER]
00:55
But we humans seem to have an uncanny knack
00:57
of making ourselves miserable.
00:59
Why? What are most of us getting wrong about happiness?
01:03
And how could we all strive to be happier?
01:07
Oh, that is a tough question.
01:10
NARRATOR: Maybe to understand,
01:11
we need someone with a different outlook on life.
01:15
That's where Jessica comes in.
01:17
Jessica suffers from nerve disorder HNPP,
01:20
and rare auto-immune disorder MCTD.
01:24
Which means she sometimes has to use a mobility aid.
01:27
I'm mostly deaf and partially visually impaired.
01:29
NARRATOR: Jessica doesn't let it get her down.
01:31
I guess that's why you've asked me
01:33
to be your exhibit on happiness in this film.
01:35
It's important to remember
01:36
that I have the same needs and desires for happiness,
01:38
just like everyone else.
01:39
It's just that I faced a fair few obstacles along the way.
01:42
And, I guess that's given me a unique perspective
01:45
on what actually makes people happy.
01:48
NARRATOR: Couldn't have said it better myself.
01:50
So what do people think is the key to happiness?
01:53
We went on to the streets of Brighton,
01:55
where Jessica lives, to find out.
01:57
Hmm. That's a good question.
01:59
Financial stability, probably.
02:01
A hundred grand a year, I guess.
02:03
More money,
02:04
and a nicer car.
02:06
Probably like a Chanel bag or something, yeah.
02:08
Um, enough money to travel the world.
02:11
Shares in a business.
02:12
Just to be able to buy a house would be, uh,
02:14
would be nice.
02:15
A plane.
02:17
NARRATOR: But are money, cars, a bag and a plane
02:21
really what would make the good people of Brighton happy?
02:24
Or might the secret of true happiness
02:26
be a little more surprising?
02:29
A 60-second guide to happiness.
02:31
The belief that we have a right to happiness
02:33
is a very modern idea,
02:35
like Segways or selfies,
02:37
but no one can agree what makes us happy.
02:39
Many think that material wealth will do the trick,
02:41
but as societies become richer,
02:43
they tend to become more miserable.
02:44
The ancient Greeks had very different concepts of happiness
02:47
to our ideas based on what we own or how we feel.
02:50
Aristotle defined happiness as eudaimonia,
02:52
a state achieved by living a virtuous life and doing good things.
02:55
While the Stoics believed that true happiness
02:57
comes from not expecting very much.
02:59
Then, in the 20th century,
03:00
happiness became all about how we feel, not what we do,
03:03
and when chemists discovered
03:05
that the feeling of happiness can be stimulated by amphetamines,
03:07
a billion-dollar industry was born.
03:09
Now, happy pills like Adderall
03:10
and anti-depressants like Prozac
03:12
are taken by hundreds of millions of people every day.
03:14
But do they actually make us happy?
03:16
The Auschwitz survivor Viktor Frankl echoed the ancient Greeks,
03:19
saying that happiness is served by selfless acts.
03:22
The more you pursue happiness,
03:23
the less likely it is to come to you.
03:25
So, is happiness something we can all find
03:28
if we just stop looking for it so hard?
03:32
What does our happiness expert Jessica think?
03:36
Because I have health problems,
03:37
I've had to learn to find happiness
03:39
when my body is trying to bring me down.
03:42
As such, I developed a pretty unique perspective
03:45
on what actually makes us happy.
03:47
And thus I present...
03:49
[READING]
03:54
[JESSICA READING]
03:56
Human connection is the most vital path to happiness.
04:00
There's moments when we open up
04:01
and share our mushy, vulnerable insides
04:04
with someone else's mushy, vulnerable insides.
04:11
[JESSICA READING]
04:13
Living with a disability and chronic illness,
04:15
I've had many, many horrible days,
04:18
when things have gone badly wrong and I've ended up in hospital
04:21
in excruciating pain and the edge of dying.
04:24
But that's not today.
04:25
And that's really important to remember.
04:28
-And to celebrate... -[HORN TOOTING]
04:29
...the amazing things about today,
04:31
both big and small.
04:33
Even if that's something as little as having your favorite drink.
04:37
[JESSICA READING]
04:39
I accept my limitations, because by setting a limit,
04:42
I also set myself free
04:43
within that framework that I've created.
04:49
[JESSICA READING]
04:51
Happiness might come all in a rush from a big development.
04:55
But it's sweeter when it builds from tiny drops within your day.
04:58
Whether that's a warm bath,
05:00
a beautiful dress, a good night's sleep.
05:02
[BARKS]
05:04
NARRATOR: Thanks, Tilly.
05:05
[TILLY WHIMPERS]
05:08
Love doesn't have to be grand and obvious and involve a ring and marriage.
05:12
It can also be the simple kindness
05:15
from one human to another.
05:16
By showing other people love,
05:18
we show ourselves love too.
05:21
[JESSICA READING]
05:23
We can nourish our happiness with the love and care of personal growth.
05:26
Every time I develop my skills and abilities,
05:29
I feel the warmest inner glow of pride.
05:33
[JESSICA READING]
05:35
I find happiness in the smallest things.
05:37
My wife's smile, my puppies' excitement,
05:40
a walk on the beach at sunset,
05:42
what could be happier than that?
05:44
[LAUGHS]
05:46
We all have pretty strange ideas about happiness,
05:48
really, don't we?
05:49
We often strive for things that just aren't possible,
05:52
and then get upset when they don't happen.
05:54
I believe that happiness should be like health.
05:56
Something that we prioritize and acknowledge takes work.
06:00
We've all been dealt different cards in life,
06:03
but only through acceptance
06:05
of our misfortunes and what we're missing
06:08
can we truly see the beautiful things that we do have in life,
06:12
and, goodness, isn't that lovely?
06:14
So, that's my list of what makes me really, genuinely happy.
06:19
But my challenge to you
06:20
is to think about what that is in your own life.
06:23
And then, to live it.
06:25
If you'd like to see more in this series,
06:27
subscribe to The School of Life channel.
06:29
[THEME MUSIC PLAYING]

I've done some reading into NF2. I am so sorry that you have to deal with this.
I saw that your vision loss, according to what I've read, is probably due to cataracts (lens clouding). My mom had cataracts and got her lenses (her real eye lenses) replaced. Is that an option for you?

[Vivianne]

I forgot the issues with my left eye, but there’s a tumor behind my right eye causing vision issues. I do have cataracts, but I don’t think we’re planning on taking care of them yet.

My eye dryness is caused by facial paralysis. My right eye does not close fully or produce tears.

Thanks for the transcript! I subscribe to a similar set of beliefs about happiness. Jessica is really an awesome person. She’s very remarkable to find her own happiness and spread it.

[galled]

I forgot the issues with my left eye, but there’s a tumor behind my right eye causing vision issues. I do have cataracts, but I don’t think we’re planning on taking care of them yet.

So it sounds like it's an option (when the time comes). That's good news! My mom's eyesight was better than she's ever had after the surgery. She wore glasses before she had her lenses replaced. She said it was very easy (an outpatient thing--done in under an hour). I kind of wish I could get that done, but I'm told I'll have to wait until I get cataracts. It seems it's easier to take the old lenses out when they're very cloudy.

My eye dryness is caused by facial paralysis. My right eye does not close fully or produce tears.

If you don't already use them, my optometrist recommends lipid based eye drops for dryness over other types. Lemon has had very good results with them.

Thanks for the transcript! I subscribe to a similar set of beliefs about happiness. Jessica is really an awesome person. She’s very remarkable to find her own happiness and spread it.

I kind of thought you'd have similar thoughts. Yes she is! I had never heard of her before, but I guess she has her own youtube channel and massive followers. I can see why--she's very uplifting, fun, and inspiring. So you can see why she made me think of you!

[Vivianne]

I’m a bit tired, so this will be quick:

Yes, I use artificial tears, and often. Dryness still occurs sometimes. It got bad enough that a corner of my eye had to be sewn shut.

I’m flattered that someone as incredible as her made you think of me! I’m an advocate of happiness through self discovery, however that happens.