Mobility Awareness

Kelsey Roggenbuch: We get a countdown. You ready for this?

Andrea Malik: Are you ready?

Kelsey Roggenbuch:  No, but I’ll wing it.

All right. Hi everyone. Thank you so much for joining us today. My name is Kelsey Roggenbuch and I am one of the members of the DEI committee for MI-GSO | PCUBED. October is national disability employment awareness month. And today we have one of our consultants with us. Andrea Malik. Hi Andrea!

Andrea Malik: Hi Kelsey.

Kelsey Roggenbuch: Thank you so much for taking some time to talk with me today.

Andrea Malik: Oh, of course. We’re talking about my favorite topic.

Kelsey Roggenbuch: Your babies.

Andrea Malik:  My babies.

Kelsey Roggenbuch: So you may hear Andrea and I have been friends for quite some time and we’ve gone on a long journey together through our friendship. Andrea has been so kind today to spend some time with us and talk about her daughter, Abby. You know, disabilities in the workplace and disabilities just in the world in general are such an important thing to discuss and be aware of. I think that, you know, a lot of us come from a place of privilege where we don’t know or realize the extent of what some of the difficulties are that people with different abilities face, day to day.

And so I’m really excited to talk to you a little bit more about this, to learn, to kind of go on this journey. So one of my favorite things that I’ve heard you say, and you’ve probably heard me say it now, because I think it’s adapted into my language is to build a world for different abilities.

Can you tell me a little bit more about that?

Andrea Malik:  For sure. Right now the world is really not set up to be accessible and inclusive. And the first step to being inclusive is really getting in the door. So I started noticing this most as Abby was exiting the toddler stage. You know, when she was a tiny little baby in that little car seat that you carry around easy-peasy.

But as she was exiting the toddler stage and growing, she still needed mobility support, like a stroller or a wheelchair. And really just getting in and out of buildings is difficult.

So, you know, one time as a family, we went down to Greektown in Detroit. First, there was a step up. So getting her chair up into that doorway, that was a challenge. And then everything was packed in so tight, doorways are narrow, it’s really impossible to get around. I probably would’ve given up and gone somewhere that was newer and ADA compatible, but my husband really wanted that gyro, so he like a bulldozer made our way through.

But it’s challenging, and it’s hard, and there’s times when you just don’t want to keep going, or you just don’t want to fight that particular battle.

Kelsey Roggenbuch: Yeah, absolutely. Do you know a lot about the laws that require buildings to be ADA compliant?

Andrea Malik:  I wouldn’t say I know a lot about them, but I’m educating myself on them. You know, it’s one of those things you don’t know until you experience it. And then you just start asking questions and one question leads to another, and one of the things I’ve learned as I’ve gone down this journey is to not take a no from somebody who’s not authorized to tell you yes.

Because a lot of times people, you know, they just want to end the complaint, and so I’ll just keep going politely; most of the time.

Kelsey Roggenbuch:  Sometimes that mama bear comes out, though.

Andrea Malik:  I’m human. I am human. And sometimes there’s challenges involved and anger and frustration come out but I try to remember that if I’m trying to affect change, I need to make friends.

I can tell you, like at her school recently, they did a really big renovation. Abbey’s school is one of five or six elementary schools here. And her school, the kids have various abilities, but the common denominator is usually moderately cognitively impaired. I told the principal, I’m like, Hey, I’d be happy to help, you know, be a volunteer as you’re doing this renovation to talk about the accessibility because there’s a difference between being ADA compatible, like that’s the bare minimum requirement, and actually accessible to people. And she said, no, that’s all right. We have experts.

So fast forward, that was four years ago. And I was in the building last year I had to drop her off and I noticed none of the doors had the push button to open automatically. They should be there. How do I make it that it has to happen?

So we updated her IEP, individual education plan, that establishes the goals and supports through the special education program here, to add a goal that she independently navigate the school in her wheelchair, including, and I was really specific about including, entering and exiting doorways.

So then I went to the principal special ed director, superintendent, and I said, this is one of her goals for the upcoming school year, and we have a major obstacle in the fact that the doors don’t have buttons. I kind of got brushed off of, oh yeah, we’re working on it.

And I’m like, I need something a little bit more specific because my next step, if I don’t see progress would be to file a civil rights complaint because ADA. Americans with Disability Act, falls under Civil Rights Act. Last week or the week before her teacher sent me a picture – the buttons have been installed.

And so advocating is not easy. There’s a lot of education. There’s also getting in contact with the right people and not taking a no. So there’s some challenges there, but we do what we have to, if we’re going to affect change.

Kelsey Roggenbuch: Wow. Thank you for sharing all of that with us. I really appreciate it. I mean, I can only imagine how frustrating it is, you know, to go through these processes and to have to kind of go through all this red tape, just to get the basic needs met.

Andrea Malik: To get in the door, literally to get in the door.

Kelsey Roggenbuch:  Abby is incredibly lucky to have you as her advocate. I know that you and your husband are both very supportive of her and meeting her needs and helping her get more independent. You know, it is, it is not a battle you should have to fight but I commend you for continuing to fight that battle for her.

Andrea Malik: Thanks? It’s always weird when, when people say that, because I don’t know what else to do. To me, I don’t see another option. If I don’t do something how does it change?

Kelsey Roggenbuch: Yeah, of course. Of course you’re pushing to fight for a better world for her. So thank you for sharing that. I realize we’ve talked a lot about Abby. But I don’t think we’ve talked a lot about what her diagnoses, are and what she’s kind of facing day to day. You want to tell me a little bit more about that?

Andrea Malik:  Sure. So Abby has a rare chromosome disorder.

It’s called 1Q 44 terminal deletion syndrome. All that really means is that she’s missing the very end of the long arm of her first chromosome. It’s a tiny little piece and probably 25, 30 years ago wouldn’t have been detectable.

So what that means is that she has differences in her brain structure. So there’s some challenges there. She’s not yet walking , and she doesn’t talk in the typical way. She has sounds, but she’s nonverbal in the fact that she doesn’t necessarily make words to talk. So she uses an iPad to communicate sometimes, but mainly if you listen to her and you get to know her, she has very strong opinions. Also with that brain difference, she has epilepsy. Her first few years with epilepsy were really, really challenging, but thankfully we’re five plus years seizure-free.

There’s a lot going on there, but just in general, you know, she’s, she’s good. She gets around, she has preferences. She likes to watch TV. She has, you know, she has her shows and she’s a good kid.

Kelsey Roggenbuch: And as I’ve seen, she loves movies that sing.

Andrea Malik:  Yes. She loves music.

Kelsey Roggenbuch: One of my favorite memories with Abby, is when we took them to see Frozen 2 and I was sitting next to Abby and every time they stopped singing in that movie, she was not pleased. So I just kept reminding her, the singing will start soon. Don’t worry.

Andrea Malik:  Yes. Music has gotten her through a lot of the struggles.

Yeah. . She has been in therapy since she was six months old. She has low muscle tone, but she also has spasticity, so muscle tightness. As she has grown and gone through the massive growth spurts that kids do, that spasticity had turned her feet in so that she couldn’t wear shoes anymore. And so it’s hard to try to learn to walk when you have a very, very poor foot position. So we had her foot position improved and, you know, she went through therapy after that, to rebuild her strength.

And now she’s starting the Lokomat therapy, which is it’s really to be able to work on the brain patterning and muscle memory, and also build the strength and agility to learn to walk on her own and have in the ability to stand.

Kelsey Roggenbuch:  And she’s also had surgeries. She had brain surgery, which she was pretty young as well for, was that related to the epilepsy.

Andrea Malik: So she had that when she was about three. Actually in terms of brain surgery, it was kind of a minor one. If you think of a minor brain surgery. I think we were only in the hospital for three days for that one. And she was back to school the following week.

Kelsey Roggenbuch:  I’m imagining that there’s a lot of challenges with insurance with that. We know that insurance in America is not always the most affordable or inclusive thing.

Andrea Malik:  So again, there’s a learning curve to all of this, and so Abby has our insurance, you know our group health insurance, which is good. But that means we always max out our deductible. We always max out our, our max out of pocket. And you know, we’re a family of five. Abby has a younger sister and a younger brother, so it’s not like, you know, we’re not rolling in dough over here.

So what we’ve done is worked with a lot of her physicians and the social workers through the hospitals. They told us most states in the United States have some sort of supplemental insurance. But you have to go through a process of adding the specialists to the supplemental insurance, and then you have to keep the paperwork up.

And then there’s also, you know, looking at symptomology, it’s very consistent with autism. The autism diagnosis is a hot button ticket in our country right now, which unlocks a lot of the therapy limits because typically therapy is going to be limited to like 30 visits per year. And that’s combining everything, physical therapy, occupational therapy, speech therapy.

So, you know, it’s, it’s not meant to be for long-term situations, but autism as a diagnosis can help unlock those, those limits.

Kelsey Roggenbuch: Yeah. I know. You’ve had to basically have proof that she needs certain things, right. So like her wheelchairs. and it’s a long process. I mean, these are months and months and years of, you know, work on your end and work on the doctors trying to get this proven. And sometimes Abby has outgrown the things that you’ve been trying to get for her by the time insurance approves it.

Andrea Malik:  Right. Yeah. Which is challenging. It can take months to get these things done. It took over a year to get her bed. To write the letters and to have it go through the vendor, to send to the insurance, to get the approval, to then order to come in.

So again, you make friends, right? So much of life is networking, special needs parenting, no different. It’s all about networking. So I make friends with the therapist. I make friends at the centers. I make friends at the school because sometimes she needs things and she needs things now.

And that’s a really frustrating piece for me because when a typical child, a typically developing child is learning to walk, we don’t wait to buy them shoes and say, no, no, prove that you’re going to walk and then I’ll buy you shoes.

But when a child or a person with special needs is asking for a piece of equipment that will improve their quality of life, we have to prove that they can do it. Well how does a child who’s never used a manual wheelchair prove that she can do it. It’s brand new. She needs time. And if you see her zooming around in her wheelchair, she is quite quick. She is good with it.

Kelsey Roggenbuch: Yeah. I mean, you can definitely tell the more independence she gets, she is just thrilled with it. You can see that bright and shining smile just continue to grow and I love to watch that.

So really quick I mean, it is, you know, disabilities awareness in the workplace. In your opinion, what could companies do to help ensure we are creating a more inclusive environment for all abilities?

Andrea Malik: So there’s a couple things. So first of all, recognizing that one in four adults, and that’s only adults lives with disability. That’s more than 25%. So whether it is the person that’s actually in the workplace, or your team member is helping support and care for somebody at home, recognizing that and that the needs are different.

But then also as companies are renovating, upgrading, think about the most disabled users. The challenges of living with various disabilities you know, they can be pretty big, and so if you can make something easier, you’re going to get a customer for life.

I’ve learned a lot about design thinking in my career. And some of the best things that we use every day were designed for people with disability. Text messaging who doesn’t love a good text message. That wasn’t designed for people with, you know, solid hearing that was designed and intended to help people hearing impairments to be able to communicate via phone without having to find an interpreter.

So that’s the thing is like, bring that input. Like how are people adapting? Because most of the times those adaptations are going to benefit mainstream as well.

Kelsey Roggenbuch: Yeah, absolutely. I think that we’ve seen, you know, a ton of that stuff, even in international communication and the way that that’s helped us with that. So like you said, create it for, you know, all abilities and look at what it’s done for us.

 So, absolutely. Yeah. Well, Andrea I’m going to take a moment to plug you as a mom because I’ve known you for so many, and I just want to commend you on the incredible mom that you are.

And same thing with your husband. You know, he’s an incredible father to. You guys have done a great job, raising your kids and, you know, being an advocate for Abby on top of it and, you know, still being functioning adults. I can barely just do the functioning adult parts. So you know, thank you for not only being an incredible mom, but also being an incredible friend in for taking the time to do this interview with me today, it was so awesome.

Andrea Malik:  I don’t really know what to say. Right now. thank you. I mean, again, it’s one of those things. , I didn’t go to sign up genius and sign up for all this. But we, what we do is take what we have and we move forward and Abby is, you know, she’s a cool kid. Like I’m not the first mom to go through this. And I’m grateful for the moms who went before me and they made a difference and they changed it and they made something easier for me. That’s my goal for the next person is, Hey, I’ve experienced this. Do you want to talk about it and make it easier for that next person?

If I can. And let them know that they’re not alone.

Kelsey Roggenbuch: I love that. Well, thank you so much for taking the time to talk with me today.

I greatly appreciate it, and I hope that our listeners have learned something new and have found some value in this as well. I look forward to our next shawarma date. We will talk soon. Absolutely.