Celebrating Loving & Living Blind

This past January marked the anniversary of my becoming Blind. For most, this doesn’t sound like something to celebrate. I disagree. And in this episode I invited the three most important people in my life to reflect on the past 15 years.
Side by side photos of the Reid Family in 2004 & 2018

It’s not just a personal reflection. Rather something I think can be of use to anyone in the early stage of vision loss. Take a listen and hear how much there is to celebrate.

Listen

Transcript

Show the transcript

TR:
Welcome back to another episode of Reid My Mind Radio. I’m your host and producer T.Reid. In addition to bringing you profiles of interesting people impacted by blindness, low vision, disability, I also use this space to share my own experience with vision loss.

January 2019 made 15 years of being blind. I thought about this on the day that marked the event, the anniversary of my surgery. After reflecting for some time I decided it should be a celebration. So I invited three of the most special people in my life to join me.

And it wouldn’t be a true celebration without you.

That’s up next on Reid My Mind Radio.

Audio: Reid My Mind Radio Theme Music!

Audio: “It’s Our Anniversary”, Tony Toni Tone (Instrumental)

TR:

Today, I’m celebrating a gift of 15 years.

I know celebrating blindness seems strange to some so let’s make this clear right now, I’m not celebrating loss.

Audio: “Do you know what today is…” ” Anniversary!” from “It’s Our Anniversary”, Tony Toni Tone

TR:

Interesting fact, most marriages where a partner experiences a disability, end in divorce.

I know a little bit about marriage and disability, but I invited a special guest to help me think about this subject.

Audio: “The Baddest Chick”, Trina

[TR in conversation with Marlett:]

Can you please just state your name for the record?

Marlett:
Marlett Reid

[TR in conversation with Marlett:]

And who are you?

Marlett:
I’m the baddest chick!

Audio: As the music gets louder …

Marlett:
I’m your wife!

TR:
First, I asked Marlett to talk about what she felt were the main challenges to relationships impacted by blindness.
Marlett:

One of the challenges would be communicating. Which is considerably hard if that’s not something you normally do. And even between us we needed to be a little bit more gentle with each other’s feelings so that the other person can hear and then once that takes place then I think both parties would be able to work together. I think that was a huge challenge for us. Being able to work together or to hear each other because of not fully understanding how to communicate.

TR:
Poor communication impacts any relationship. Now take away the most relied upon method of communicating among sighted folks. That just enhances any existing problem.

Then there’s external forces.

Marlett:

People can be really rude!

They look at us as being different and their just curious. I remember it was our anniversary and we went to Atlantic City and we were online and waiting to get into the restaurant or it was a comedy club. I leaned in to tell you something and you bent down and the two women behind us leaned in as well. Laughs!… to hear what it was I was telling you or to see if they could read lips. And then I started telling that they’re leaning in… laughs… they’re leaning in to hear what I’m trying to say to you. This is what I was whispering to you.

[TR in conversation with Marlett:]

TR:
Laughing.. And what did I say…cause I know I probably said something stupid!

Marlett:
I know you were fascinated by it. You were like “seriously!”

[TR in conversation with Marlett:]

Yeh, I didn’t know!

Marlett:

Right. But that wasn’t like the first time which is why I told you. it was way more than once…

Or, we’re walking down the street and especially if it was men. They weren’t rude or anything, they would get out of our way . They were respectful in that regard. Not trying to mess with us or anything but they would just stare at you. I would look at them and then they would acknowledge me.

They would just stare at you!

[TR in conversation with Marlett:]

… long pause

So wait are you saying women don’t stare at me?

Marlett:

Laughs… Yeh, they stare at you too sweetheart.

[TR in conversation with Marlett:]

Ah, thank you Hun!

Marlett:

There was the time the woman tried to give you her number. You thought I didn’t know.

[TR in conversation with Marlett:]

You making this up… Long pause…
Did that really happen?

Marlett:
Such an idiot!

[TR in conversation with Marlett:]

(Regarding the men staring)

What do you think that’s about?

Marlett:

You look like them. Yet you don’t.
And the fact that you look like them kind of bother’s them. They’re fascinated like how are you able to do this and that. There’s many things that are probably going through their mind, but they’re still freaking rude.

[TR in conversation with Marlett:]

Yeh! Now the ladies they stare for different reasons!

Marlett:

Because they think you’re hot. mm hmm!

[TR in conversation with Marlett:]
Thank you sweetheart.

Marlett:
You’re welcome!

[TR in conversation with Marlett:]
I appreciate that. Do you want to share what we came up with because I always thought that was a great response to those types of situations. On how to handle it when people are leaning in to our conversations. You want to share what we came up with ?

Marlett:

It’s G, G rated! (Referring to the podcast.)

TR:

Putting my begging for compliments and attention aside, did you notice that. Listen again!

Marlett:
They look at us as being different.

TR:

She could have said they look at you as being different, but she didn’t. She said us. Just an observation.

[TR in conversation with Marlett:]

We know that relationships are tested during times of all types of hardships. We had a lot of things going on at the time that people say are the most difficult things to deal with;
We bought a house, you were pregnant, my brother passed away and then we found out I was going to be Blind.

Marlett:

Yeh!

[TR in conversation with Marlett:]
If you could kind of go back to any point in these 15 years, is there anything that you would tell yourself then that you think might be helpful based on what you know now?

Marlett:

I think I would tell myself to know the imp0ortance of total acceptance.

[TR in conversation with Marlett:]

Acceptance of what, what does that mean?

Marlett:

Finding out that you were going to be blind just to accept that. Understand that is the way it’s going to be. He’s going to be blind. So go from there, what are you going to do now? Not try to find a cure. What are you going to do? How are you going to live your life? That’s the important thing.

[TR in conversation with Marlett:]
You’re saying you sent time trying to find a cure?

Marlett:

I would say probably about three months or maybe a little bit more. I would go downstairs in the basement that’s where we had our computer at the time

[TR in conversation with Marlett:]
Heh! And it was cold down there too!

Marlett:

agrees)
It was really cold and I had contacted a lot of Doctors. I got responses back. If they didn’t tell me what I wanted to hear I’d continue.

[TR in conversation with Marlett: ]

Wow!

Marlett:

You see some of these people and they saw their wives for the first time. They have the glasses they put on and they

[TR in conversation with Marlett: ]

They had that back then?

They were working on it back then and I knew about that. I would see if you were a candidate.

I would tell my story . I got a lot of responses.

[TR in conversation with Marlett:]

What did they say?

Marlett:

One Doctor I think he realized that I was contacting almost everybody. He said to me.. let me explain something.

They would need the Optic nerve and you didn’t have the Optic nerve on the left or on the right. There was absolutely nothing they were going to be able to do. He was trying to let me know I could stop writing everybody and (laughing ) I guess stop annoying them. Although he didn’t say that. He really went into detail and I think that was my last one I got and then I stopped.
[TR in conversation with Marlett:]

So if you’re doing this and somebody’s telling you to accept it, I don’t think that would have done anything for you. Just the words, like what would have made you…

Marlett:

No, that would have done it and I’ll tell you why. No one was telling me anything. They would tell me… “Oh I’m so sorry!” “Oh you poor thing” I didn’t want to hear all that. If someone sat me down and said you’re trying to find this cure that’s not there when your husband’s there you just need to accept him. If it’s meant to be, if there’s going to be something you know you’ll come along and you’ll find it. But not to sit down here and spend hours and hours because I had no one to talk to. No one understood. I was just annoyed when they did say something which was usually something stupid.

TR:

15 years later, I can see the value in celebrating all aspects of My adjustment.

Remembering the good and bad.

All of the thoughts following the realization that I would never see again. The things I naturally thought I’d miss. The inability to see a future.

After a while though, there were breaks between consecutive days of feeling that way. Bridged by small successes along the way. Days that included accomplishments, random laughs and even short glimpses of hope.

A bit more confidence returning every day. Even if I didn’t realize it at the time. Like the realization that the things I thought I’d miss weren’t as important as the things I still had.

Like my baby girls!

A 6 year old.

[TR in conversation with Riana:]

Please state your name.

Riana:
My name is Riana. (Sounding tired or sad…)

[TR in conversation with Riana:]
Ah, what’s the matter Riana… (baby talking voice…)

Riana:
Laughs… shut up!

[TR in conversation with Riana:]

laughs… For the record, how old are you?

Riana:
21.

[TR in conversation with Riana:]
What happened to 21 Honey!

Riana
No, it was 20 Honey! And 21 is 21, 21, 21 cause that’s what 21 Savage says. Duh!

TR:
And that little baby who was born just prior to me losing my sight.

Audio: “Hi my name is Raven!”

TR:
Well, that was her at about 3… here she is now.

Raven:
Hi, I’m … (laughs)!my voice cracked! Hi, I’m Raven!

TR:
Two baby girls and two separate experiences of my blindness. Well, maybe some overlaps.

The differences seem expected. One knew a father with sight the other never really did.

Let’s start with Riana.

I asked both of my daughters to give some advice to a little girl who is experiencing what they did as a child of a parent who becomes blind.

[TR in conversation with Riana:]

She’s dealing with issues that you did deal with . People who stare.

Riana:
Mmmm!

[TR in conversation with Riana:]

What would you say to her in terms of dealing with those types of things.

Riana:
I’d say first off, I completely understand what you are going through, because I deal with it all the time! (Expressed forcefully)

[TR in conversation with Riana:]
What is it that you deal with?

Riana:

People staring at my father. People staring for too long. That’s what the problem is…
I feel like… (exhales in frustration) I’m trying to get my words together because my temper’s coming up! I don’t want people to view me as such!

[TR in conversation with Riana:]
Ah, so you get angry.

Riana:

I don’t get angry. I get annoyed.

[TR in conversation with Riana:]
About?

Riana:

About people. I’ll be blunt. People just don’t know stuff. Their trying to learn because they’ve never seen it before. I don’t even mean a Blind person. It can be anything. I stare at things some times. You might stare at things.

[TR in conversation with Riana:]
Laughing… No I don’t …

Riana:

I get it. I’m talking to that little girl.

[TR in conversation with Riana:]
Oh, ok!

Riana:

Saying that like she might stare at things too. Everybody stares

[TR in conversation with Riana:]
What do you think the difference is between a normal stare and a stare that becomes intrusive?

Riana:

When you stare too long! When you’re staring at people just doing regular Things. Let’s say your father has a guide dog. You’re looking at the guide do and you’re like ok this is interesting this is new, well maybe I’ll Google this and then you stop staring. But when you’re just staring a person if you literally turn the table clearly that would make you uncomfortable. Stop doing that!

I’m trying to do like the four principle things and one of them is don’t take things personally but when people are in your personal space I’m going to take it personally!

TR:

Riana’s passionate about this subject.

She’s referring to the book by don Miguel Ruiz, called The Four Agreements.

Riana:

You have every right to take it personally, but don’t let it hurt you because you have to understand that it’s all on the person and not your father or mother who lost their sight. And I know for a fact that I knew that when I was younger but I did not know how to communicate that to you Daddy because sometimes I thought that, you did say that, that I was embarrassed by you but I wasn’t . I was just annoyed by people. That’s literally been me since day one. I don’t like when people are r nosy. When we go to all white places like the diner and I would get mad that people stare. People were not staring because you were Blind people were staring because we were Black and that makes me mad.

[TR in conversation with Riana:]

Laughs.

Riana:

But I’m not embarrassed. I’m serious, I’m not embarrassed to be Black.

[TR in conversation with Riana:]
No doubt!

Riana:

You know what I mean. That gets on my nerves when people are so intrusive. I can be quiet and shy, but I do have a very strong opinion about almost everything in life so I sometimes want to communicate that opinion to these people. Stop looking. You want to learn more, YouTube. There’s literally the whole entire internet for you to learn. Or if you want to learn more come talk to him. Like ask him some questions that are not offensive you know what I mean, think before you say. So that’s what I would tell to the girl. If you really truly have a problem and they’re really staring you can go up there and talk to them and say like hey if you have some questions you can come up and talk to my father or my mother. But if you’re not going to ask the question stop staring, cause you got a phone!

[TR in conversation with Riana:]
Got a phone as in you can Google it!

Riana:

There’s computers. If you don’t have a phone or a computer there’s a local library. Like come on! There’s so much knowledge you can get! (Said very intensely!)

[TR in conversation with Riana:]
Ok, alright, alright! Easy easy, woosa!

Riana:

Woosa!

The two laugh…

Riana:

Daddy I’m rocking back and forth…

The two laughing!

It just gets on my nerves some times.

[TR in conversation with Riana:]
Ok, so now what would you say to the parent. Because you said something interesting that I assumed you were embarrassed.

Riana:

You did. All the time!

[TR in conversation with Riana:]
Laughs…

Riana:
I’m serious you did.

[TR in conversation with Riana:]
I don’t know about all the time but, but ok, ok! Part of that is because you were too young like you said to communicate back.

Riana:

Communicate how I felt!

[TR in conversation with Riana:]
So what would you say to a parent?

Riana:

That sometimes kids don’t know how to communicate how they feel. Sometimes the other person doesn’t know the words to say about the situation.

TR:

Good advice and the whole idea that the problem is with the person staring and not taking it personally… I love that.

For Raven, who was born right before I became Blind there’s no change, nothing to really adapt to. Having a Blind Dad, well that’s just…

Raven:
Just like having a Dad but he can’t drive me places. Laughs… Like that’s it. That’s the only difference.

TR:

Normal

Raven:

I thought everyone had a parent that was blind.

[TR in conversation with Raven:]

Laughs…I don’t know why that makes me laugh.

Raven:
I don’t know either.

[TR in conversation with Raven:]
It’s cute and it’s also… I think my child needs help.

Raven:
I really did.

[TR in conversation with Raven:]
No, I’m just joking!

Raven:

I have cousins. I did not process this thought.

[TR in conversation with Raven:]

No, but that’s cool though!

TR:

Laughs…Normal is in the eyes of the beholder!

Now look! Don’t let her calm approach fool you.

[TR in conversation with Raven:]
What were the questions that you got from school?

Raven:

I remember getting annoyed at certain questions because people would ask really stupid things.

Like “How does he eat?”

Like with a fork!

If someone asks like how you lost your sight, I’d be like oh cancer. I would be fine answering those types of questions. But yeah, they either ask stupid questions or it would just be like how did he loose it.

[TR in conversation with Raven:]
Nobody was like you know, teasing or nothing like that?

Raven:

I would have punched them!

[TR in conversation with Raven:]

Ok, I raised you right!

Raven:
Laughs!

TR:

Raven’s advice for that young girl who’s parent is newly Blind is a little different.

Raven:
Well, I’d tell the child that their hearing is advanced so you can’t get away with anything. So don’t try it!

[TR in conversation with Raven:]
Laughing… Oh my goodness.

Raven:

No that’s an actual thing. You lose your sight other sights (senses) get hire.

[TR in conversation with Raven:]
I pay attention. No, no it’s not!

Raven:

It’s a thing. I learn that every single year in Science.

[TR in conversation with Raven:]

They are incorrect!

Raven:

It’s like if you’re trying to listen to a conversation and there’s a bunch of conversations going on around you and you’re listening to that one conversation and you’re focused on that one.

[TR in conversation with Raven:]
You’re focused. Nothing increases.

So for example. If you have a radio in here, right. That radio only goes up to a certain volume.
Raven:

But if you plug a speaker in…laughs…

[TR in conversation with Raven:]
Laughing… No but , just because that speaker loses a button doesn’t give you an extra speaker.

The two laugh together.

Wow, my own daughter has that false belief.

Raven:

I was told that every single year of my life.

[TR in conversation with Raven:]
By who?

Raven:

My science teachers. I’d tell you the stories back in the day how like every time we’d talk about …

[TR in conversation with Raven:]
Senses?

Raven:

Senses! I’d be like hey guys my Dad only has four… laughing…

But we’d always talk about the senses and they’d be like if you lose one of your sense the other ones are increased.

[TR in conversation with Raven:]
No, it’s false!

Raven:

Did you feel that punch!

[TR in conversation with Raven:]
Yes.

Raven:

Exactly, you would not have felt it if you could see!

The two laugh…

TR:

Not only is there false information and stereotypes, but if you think about the way the word blind is used and it’s understandable why people can have a hard time accepting blindness.

More often used to describe everything other than the loss of sight.

Audio: Mix of songs featuring metaphors for blind…

“I’d rather go Blind” Etta James
“When a Blind Man Cries” Deep purple
“Channel Zero” Public Enemy begins with “You’re blind baby, you’re blind from the fax cause you’re watching that garbage!

TR:

Pair blind with other disabilities and oh boy!
As in you’re deaf, dumb and blind.

It’s no wonder that For many adjusting, blind becomes a word to run away from. I don’t think I ever had that choice.

Avoiding the word Blind was the equivalent of trying to pretend I was sighted. I just wasn’t going to be able to get away with that so why even bother.

the word that I did have some feelings about was disabled. I felt as though it ruled out all of my possibilities. Where blind was specific to my eyes, disabled seem to imply that there was nothing about me that worked. A disabled car sits on the side of the road until taken away and or repaired. Athletes on the disabled list don’t even get to suit up for a game. Once again restricted to the sidelines.

But, adjustment is ongoing. You learn new ways of thinking about it, new philosophies.

Like choosing how you view disability.

Do you see it from a medical perspective? As in we need to heal or cure it in order to fix all of the related issues.

If we cure that blindness you won’t need a screen reader. Just fix those legs and who needs curb cuts for wheelchairs. You don’t need wheelchairs.

What about an alternative perspective?

Like the problems with disability stem from the lack of access and societies negative perceptions and expectations.

I also became familiar with person first language as in a person with a disability versus identity first as in Disabled person, Blind person.

This is recognizing Blind as an additional characteristic.

Riana:

If somebody asked me what my father is, you know I might say he is Blind. He’s Black. He’s bald. My father’s probably why I’m this. Or he taught me this or he’s my best friend, I might say that!

[TR in conversation with Riana:]
Ah, thank you sweetheart.

Riana:

I might leave the baldness out but I’d say he’s Black and Blind.

[TR in conversation with Riana]

You changed my Netflix profile to say that!

Riana:

Laughs.. Yeh, baldy!

The two laugh…

TR:

But, isn’t blindness and disability something I’m supposed to overcome?

Audio examples from news segments bridged by static signal…

“He overcame the odds and conquered his disability in the most incredible way”
“Made his disability anything but a disability”
“Doesn’t use her crutches as a crutch”

TR:

We hear things like ” You do that so well I forget you’re blind Based on the common belief around disability, around blindness well, I know I’m guilty of thinking it was a compliment. But it’s not!

More than likely, it’s not said with bad intent. No, they believe this based on their image of blindness. To them not seeing it says something good about you and them. Similar to the false idea that being color blind is helpful to race relations.

I want you to see my blindness. I really want you to know what it actually means and get rid of the nonsense we’ve been fed.

[TR in conversation with Marlett:]

Do you think you look at blindness differently after 15 years?

Marlett:

Yes.

[TR in conversation with Marlett:]

Tell me.

Marlett:

Blindness affects your eyes and that’s it. Not your mind. Not anything else. You just got to do things differently.

TR:
My blindness is now a real part of me. Like other aspects of who I am it’s reflected in the things I do.

My blindness is in the way I walk down the street. And yes, my blindness still has a bop to it!

My blindness is in how I raise my kids. The way my family and I travel. It’s right here in the way I produce audio.

I once thought my podcast shouldn’t be limited to my blindness.

I thought certain topics were blindness related and then there was everything else…

One in 5 people have a disability. Blind people participate in every aspect of life.
Politics, Art, culture, sex.

Me producing and hosting means I can bring a blindness perspective. It doesn’t mean I have to, but there’s no real reason I can’t or shouldn’t.

It’s a part of me and therefore a part of the things I do.

It’s not all of me but a part. I mean, I’ve been blind now for 30 percent of my life.

The name may not reflect it out right, but this is a disability podcast. It’s a blind podcast. It’s everything that I am. It’s Black, it’s Hip-Hop! Those who know can hear it.

It just is because it’s me and it’s my thing!

Audio: It’s My Thing, EPMD mixed into 7 Minutes of Funk…

I don’t consciously recognize my anniversary every year. If it makes itself present, cool! I acknowledge it and personally reflect. Would I like a cake and full celebration? Who wouldn’t like cake?

But I want this celebration to not be mine alone.
I’m thinking of those going through something similar.

For many, the idea of becoming blind is worse than death. That’s not hyperbole.
Different polls have shown this to be true for many.
I’m alive and kicking so I guess I can’t truly make the comparison.

I know not everyone consider celebrating 15 years of being Blind…

Marlett:

If I had to be honest, that’s not how I looked at it. Although I tell you, I remember the prayer that I had. I don’t care what happens, just don’t take him from me. I’m going to start crying. Just don’t take him from me.

[TR in conversation with Marlett:]

Mmm! That’s cool… that’s cool!

Marlett:

I just remembered that in that moment. It came back to me.

[TR in conversation with Marlett:]
Thank you baby, I appreciate that! Nice job!

Marlett:

Thank you!

TR:

This is a celebration of adjustments, acceptance , love and life!

[TR in conversation with Marlett:]
Instead of being in the cold basement researching. If 2003, 2004 there were a podcast called Reid My Mind Radio and you had a fly dude kicking’ the ballistics… laughs… No seriously, if there were a podcast for you to listen to would you have liked to hear from other people on a podcast?

Marlett:

Absolutely! I was, I was hungry…

[TR in conversation with Marlett:]
I think that was too, that’s too sexy Marlett. You can’t …

Marlett:

I didn’t try to be sexy…

[TR in conversation with Marlett:]

I know but you can’t say hungry. there’s no way I can put that on the air like that. You got to explain it again.

Marlett:

I was looking for something, anything…

[TR in conversation with Marlett:]

Mmm! There you go again. You see, you’re making it sexy. Stop . Just say it without being sexy.

Marlett:

I was looking for answers and there were none. There was no one there to… I felt like to guide me through this journey.

[TR in conversation with Marlett:]

Long pause…

I’ma guide you through this journey! Laughs… fade out.

TR:
Hollaback…

We have the comments section on the blog, ReidMyMind.com.
The email; ReidMyMindRadio@gmail.com
The Reid My Mind Radio Feedback Line where you can leave a voice mail: 1 570-798-7343

I would really love voice messages that I can share on the podcast. If you don’t want to call, you can grab your smart phone and record a voice memo and email the finished recording to ReidMyMindRadio@gmail.com.

I’d love to hear and share the voices of those who are listening. If you want to send a message but don’t want it shared just say so and it’s all good.

Another way to show your love if you like what you hear…

Subscribe!
Apple Podcast, Spotify, Google Podcast Sound Cloud, Stitcher, Tune In Radio or wherever you get podcasts.
Visit www.ReidMyMind.com

So there’s no confusion,
… TR in unison with Marlett:
that’s R to the E I D like my last name!

Peace!

Hide the transcript

Comments are closed.