School life

(MUSIC)

Anna-Marie: (0:12 - 0:48)

Hello, welcome to SpineCare's 40 Voices for 40 Years podcast, a podcast series about childhood-acquired spinal cord injury and dysfunction, produced by 2SER Radio for the SpineCare Foundation. In this podcast series, we'll have families join us to swap tips and share their experiences on plenty of topics, so lots of big topics but also the everyday things. I'm your host, Anna-Marie Reyes, who is the executive producer for this series at the community radio station 2SER 107.3 FM.

David: (0:50 - 1:08)

All schools, the Department of Education, private providers, they're all working under the Disability Discrimination Act and so they're all required to support students with disability and to give access to participate in education on the same basis as other students.

Anna-Marie: (1:11 - 2:05)

And you just heard the voice of David Dietz. He has worked as school principal for Smiths High School in Wollongong and he's been teaching for 30 years now. He will be speaking with us shortly about school life, choosing and preparing for school, managing the classroom and more. But before all that, let's hear first from Hayley Slocum. She's a young person with lived experience of spinal cord injury as an infant. She's now an accomplished scholar and athlete.

It's a delight to have Hayley with us, an elite para-athlete ranked in the top 50 players internationally in wheelchair tennis and a university scholar studying a Bachelor of Secondary Education majoring in History and Geography. She also works with New South Wales Wheelchair as a sports employee.

Hayley: (2:05 - 2:31)

Thank you so much for having me. So my name is Hayley Slocum, I play wheelchair tennis and I also work for Wheelchair Sports New South Wales as a presenter. So I go out to schools, present about inclusion and road safety and they're able to all have a go wheelchair basketball. And yeah, it's good educational moment for them as well and super fun.

Anna-Marie:  (2:32 - 2:44)

In your university study, I understand that inclusive practice is embedded in your coursework from both your primary and high school. What does it look like in everyday life being at school in those levels?

Hayley: (2:45 - 4:01)

Yeah, so I'm studying a Bachelor of Education majoring in History and Geography, and part of my education degree is learning about how to teach different people. So people with disabilities, cultures, everything like that. But I think that there's a gap in understanding everyday life in a wheelchair, which would need to be filled. We've got like, inclusive education, which means all students, as I mentioned, but sometimes there's a bit of muddy water when it comes to what can that mean. The one that I find is the most gap would be for me in PE where I'm so heavily involved in wheelchair sports. I know what people in a wheelchair or with a range of different disabilities are able to do in sport.

But I find that maybe there's a lack of understanding from a few teachers out there. For example, I think inclusion might be that the child in a wheelchair can sit and watch and maybe they can referee. But although that's an attempt at inclusion, the child isn't doing the same thing as all the other kids in getting physical activity.

Anna-Marie: (4:01 - 4:06)

You mentioned apparently something like greeting the individual in the chair, like how does that happen?

Hayley: (4:07 - 5:05)

To gain the best understanding about an individual in a chair, the best possible thing you can do would be to talk to them. Most people are completely open about what they can do, what they can't do, what they're comfortable with, past experiences. And I think talking to them is the best sort of behavior management and... inclusion that you can do - as well as talking to maybe other teachers that have either had that student in the past, say it's the student having to repeat themselves constantly, and also talking to other teachers that might have had a different student in a wheelchair and been like, How did you manage this situation? What did you do? And how did that work?

And I think learning from not only different students, but also teachers and educators is very important.

Anna-Marie: (5:05 - 5:10)

What about the student themselves? If the teachers can't read them, what can the student do?

Hayley: (5:11 - 5:52)

Yeah, so the student can always, if they're comfortable, talk to the teacher that they can approach the teacher, or they can approach an occupational therapist, or their parents, whoever they're comfortable with, they can have help facilitate that conversation for them or with them as a system of support. Because occupational therapists are also very educated in how to get people with a spinal cord injury involved in different aspects of life, whether that be education, or work, or recreational activities as well.

Anna-Marie: (5:53 - 6:07)

When you visit schools with your wheelchair sports experience, it's not just a whole lot of fun for everyone, but a big part of it is building empathy and like you said, understanding what is inclusion. What do you notice in staff and students as they go through this experience?

Hayley: (6:08 - 7:22)

There's a big gap in knowledge for the students to have that understanding. That's why the program is so important. It builds that knowledge and understanding. I go in and I explain what my day looks like and how it might be different. So transferring, how I cook food, how I drive my car, different technologies that are out there to help me. And it's all seemingly new information, which makes sense if they haven't had those interactions or discussions before. Of course, it's going to be new information. But afterwards, you start seeing, Oh, that makes sense. 

And once you build this understanding, there's more empathy and more tolerance. So for example, if a student struggles to push a certain distance in time between two periods of class, they might need to leave the class a bit early. And another student may not understand and go, Why do they need to leave early? That's not fair. I want to get out of math too. When you have this discussion of, Oh, this is why, that's less likely to happen. And it leaves them less feeling excluded or different.

Anna-Marie: (7:22 - 7:38)

So from your experience, how would you prepare a young student who uses a wheelchair for mobility, either when they're starting school or returning to school after a spinal cord injury? What can they expect? What's a positive way to handle well-meaning help?

Hayley: (7:38 - 8:51)

Yes. Yes. There's of course going to be aspects of life where that student is going to need help. But there's also this whole other side where people offer help that isn't necessarily needed. And that can make you feel a bit useless. You think, Oh, they don't think I can even push my chair up this hill. They do not think of much of me. Although it comes from such a caring place of wanting to help and being like, I'll just make it a bit easier for them, it's not what we really want. And most people, when they need the help, they'll ask. And before helping someone, whether that be pushing them up a hill, you always need to ask because you are, but make sure to give enough time that they've tried it on their own.

Because you never know, they might surprise you. And they might use their other hand. And all of a sudden that hand has more mobility. And I think, okay, now if I need to pick something up from the floor, I'll use my left hand instead of my right. Allowing people to go through this trial and error process is so important to develop skills and future independence as well.

Anna-Marie: (8:51 - 9:02)

Was there anything different that you did to organize notes or make your study easier for your subjects and accommodations that can be made if someone needs it?

Hayley: (9:02 - 10:06)

Yes, a hundred percent. Accommodations can always be made and problem-solving skills doesn't need to be an individual thing either. You can have a talk about any sort of accommodations that need to be made. So for me in primary school, I couldn't carry all of my equipment at once. So I had a locker. So I would carry everything I needed for the first half of the day. And then in that halfway break, I'd go to my locker and swap everything out of my bag so that I had a lighter load to carry around. Another good accommodation was taking notes online because the laptop is far lighter than carrying all my notebooks or workbooks and reading books and other resources for the day. 

So the laptop stores absolutely everything, which is why technology these days is so important and so helpful. It's great. But there's obviously a range of different accommodations that I haven't learned yet either because there's just so many.

Anna-Marie: (10:07 - 10:14)

So in your experience too, what can be done to make electives accessible, especially like the practical subjects?

Hayley: (10:14 - 11:25)

Yes. So for myself, I chose the elective textiles, which the foot pedal, I can't use. I can't use that because I don't have full function of my legs. So we instead had a hand-driven sewing machine. So the click of a button and that made me being able to do it completely independently. Yeah. And I guess with woodwork as well, lower benches made everything super accessible for me. And that's the same with food technology, moving the kitchen benches in the classrooms lower. Yeah.

And that was all basically that I needed. And with the bigger equipment for woodwork, all the students get the teacher to do all of the heavier lifting and everything like that. So it really wasn't too difficult. I think the hardest part was organising all of it, but I was so lucky to have OTs and teachers' aides and everything to do that for me behind the scenes. I didn't need to be too involved, which made it a pretty normal experience for me. Yeah. 

Anna-Marie:

So the ideal obviously is that for a student with a spinal cord injury or any disability, thoughtful accommodation and modifications are completed behind the scenes by staff and parents to ensure that school is fully accessible and immersive for them before they even get there. But do you also recommend that the student uses these resources to develop good problem solving skills for themselves?

Hayley:

A hundred percent. I have always seen it as these conversations I want to be a part of because I can use these problem solving skills in the future. If I'm ever alone and maybe the train isn't dropping me off to somewhere that's accessible, I need to be able to figure out practices, resources that I can use to help me in the real world.

Anna-Marie: (12:13 - 12:19)

And what was your experience like when you use some of these supports, like the Support Learning Support Officer, for example?

Hayley: (12:19 - 13:01)

When I was younger, I didn't really appreciate this resource initially. I thought, no, I just want to do it on my own. Leave me alone. I was very stubborn, stubbornly independent. I thought, oh, stop hanging around me. So embarrassing. Just leave me alone. But now I look back and go, they actually helped me with so many different tasks that at the time I thought was honestly annoying. I was like, Oh, please go away. But now I know, they made life for me in school so much easier - because they would ask me, What do you want to do? And they would make it possible. Stuff like that.

Anna-Marie: (13:01 - 13:05)

Thank you so much, Hayley, for joining us. Is there anything else you want to add?

Hayley: (13:06 - 13:38)

I think that whatever you wish to do, if you're in a wheelchair, have a spinal cord injury, there is always options for you out there. I think just talking to a range of different people about, Hey, what did you do? How did you solve this? ... is also such an important resource. We've talked about the community of people that support people in wheelchairs, but there's also a massive community of people in wheelchairs that support each other. And for me, I found that through sports.

Anna-Marie: (13:38 - 13:53)

You made a comment about, if a friend is inviting you over and they're not quite familiar about how to prepare or checking if it's the right setup for you, if you're like sleeping over a mate's place...

Hayley: (13:53 - 15:32)

Yes. A hundred percent. These barriers may be getting erased from schools nowadays, but there's still barriers out in the real world. Like when you first meet a new friend and they think, I want to invite you over to my house, but there might be a lot of stairs or the bathroom might be small, stuff like that. I remember back in high school, there was a party and my friend was like, Sorry I didn't invite you, there was just a flight of stairs and I didn't want to make you uncomfortable.

But I think part of that is you need to be able to explain to your friend that might be in a wheelchair. Here's what I'm thinking. I'd love to have you there. What can we do? Because for me, my friends now, they all carry the chair up - with me in it sometimes - to get me to different places, whether it be restaurants or the bars, stuff like that. But in school, it would just be a friend's house. And if you have that conversation with your friend, like, Oh, how big is your bathroom? Do you reckon I could fit this in here? They would know their house pretty well, and be able to problem solve. Even the back door is always a good option. Sometimes the back door is more accessible than the front and that works just fine. 

Yeah, there is nothing to be embarrassed of when you talk about this. Everyone has different challenges that they face and being able to reach out to different people can help with your mental health and problem solving, everything like that.

Anna-Marie: (15:33 - 16:09)

Thank you so much, Hayley, for joining us. 

And now over to David Deitz. David has worked as school principal for Smith's High School in Wollongong for 30 years now. In this segment, he speaks about the importance of inclusive practices within the school system and how parents can plan ahead in the transition into school life. David says conversation in the family about choosing a school for their child is best happening early. He adds that it's going to be different for each family, but it's important to consider what suits the family.

David: (16:10 - 18:04)

It's going to be different for every family. But I think that the number one thing is to think about what would suit the family. So they should never be thinking, Oh, I couldn't go to that school because it's got too many stairs or Can't go to that school because the public transport to there isn't good enough. I think they need to think about what they believe would be the best place for their child to go to. That might be the school where they have other family members attending... and talking to the principal and looking at how to make that work. Because... regardless of the school setting, the Department of Education supports students with disability, and will make things happen to allow them to access the school on the same basis as other students.

Let's take the example of a child moving from the primary school setting into the high school setting. The earlier the better. So a student who was looking to move into a high school in year five, they would be starting the process there. And they'd be beginning a process called an Access Request in year five. And basically what that does, it alerts the Department of Education to the fact that there's a student with particular needs moving into the high school setting. And the Department of Education will then go to that school, do an assessment and then start to do modifications to that school site to support the student with a spinal cord injury.

Let's say they're going to a school that has buildings with no elevators. The department will then identify which building needs to be prioritised, put in elevators, put in ramping, put in railings to allow that child to attend that school.

Anna-Marie: (18:06 - 18:14)

And so what can parents expect of school in terms of inclusion in classrooms, curriculum, campus or the playground?

David: (18:17 - 19:42)

All schools, Department of Education, private providers, they're all working under the Disability Discrimination Act. And so they're all required to support students with disability and to give access to participate in education on the same basis as other students. In my own school, my school isn't a school that's particularly well set up for anyone in a wheelchair, including myself. And so I'm working with the department to, number one, improve access... but secondly, it comes down to the way in which our classrooms are set up as well to allow students to have that support. 

One of the other things that students and their families will develop with the school is basically something called Integration Funding Support. And basically that funding looks at students' physical health, learning needs, and funds are allocated to the school to support that child in all those areas. So whether it be a learning support officer to be in the classroom with the student to assist with the learning activities, supporting the student with the health and wellbeing activities, those things are supplied. So it's not only just the physical structures within the school, it's also the learning support that goes along with that.

Anna-Marie: (19:42 - 19:55)

I also ask David that since many students, adults and young children do strive to be independent in their lives, do the schools have any role in supporting that independence in educational settings?

David: (19:56 - 20:56)

Look, I think that students in conjunction with their families will have certain goals, particularly around how they increase independence - and that's something that I guess for myself, that's something that I look to, how can I be more independent and less dependent on people? And I guess for every person with a spinal cord injury, they're going to be on a different pathway... along that journey. It comes down to those conversations where you talk about and review that. 

And so a student coming into a school initially with a spinal cord injury might be getting a lot of support and assistance, but there will be reviews where we would be looking at the goals to increase independence and looking at ways to support young people in becoming more independent. That would be part of that review process around their integration funding.

Anna-Marie: (20:57 - 21:18)

While planning ahead is key to this process, David also offers tips for families when it comes to funding applications for that inclusion and integration to take place in the school setting. These funding applications can help, for example, with assistive technology and during assessments.

David: (21:20 - 22:37)

I guess... for students with disability, the school would be already making adjustments around assessment from day one when they're in the school system. So a student with disability in year seven, adjustments would have been made or should be being made all the way through their schooling. And schools look to the HSC and the provisions that can be made for students to do that in a consistent way, so that when they do get to the HSC, they're not disadvantaged, that they've had a long lead-in in relation to the sorts of things that may be provided.

For example, it could be that a student gets extra time with assessment tasks. A student receives assistance in terms of a writer or a reader. All those things are allowable at the HSC level, and so schools like to backward map from there to make those adjustments for students as they progress through high school. So it's certainly a common part of the HSC, the provision of adjustments and provisions, and that should be happening throughout the high school journey.

Anna-Marie: (22:38 - 22:47)

And what about if a family or student feels their needs are not quite being matched by the support? What steps can they take?

[Speaker 2] (22:48 - 24:57)

I guess the first step is always to talk to the school, talk to the principal. The school has that responsibility, but there are some times that schools may not have the experience, and students and their families can reach out to what's called a team around a school. And so the Department of Education has specialists who are experts around disability provisions, and those people can be contacted at regional offices, and those people can then work with the family and the school to make a positive difference in that space. The access request sets things in place. It gives the Department of Education time to make those adjustments to the school, the physical adjustments, and the Integration Funding Support. 

Often that will carry over from primary school into the high school setting, so that access request is important. And the Integration Funding Support, that basically looks at the disability, what's needed, and so those funds could be used for a learning support officer to be working with that student in the classroom. The funds can be used for support to the teacher to modify assessment tasks, modify the learning. It can be used for... their health needs, so whether it be catheterising, all those sorts of things, medications. And then the school would then employ people to work in that space, and/or they would employ someone, get them trained as well to support that young person. 

So yeah, so the Integration Funding gets allocated to the school where the student's attending, and then the school employs people to support that child in the identified areas, whereas the access request is about the transition into the school, making modifications to the school that would be needed. And I guess the access request would also be relevant to a child who sustains a spinal cord injury and is moving back to their primary school or high school, making those adjustments.

Anna-Marie: (24:59 - 25:34)

Not only it can be daunting for young people when entering school for the first time, but also going back to school after being away. There's the nervousness about being accepted again by your peers or the changes that you've gone through and having to readjust again. David says it's human nature to feel worried about transitioning to school or going back following an injury or being away. He reassures us that at most times people are kind and generous with families living with spinal cord injury and transitioning into school life.

David: (25:36 - 27:35)

I think it's human nature, whether we're young or old, we're self-conscious having a spinal cord injury. We automatically think that people aren't going to be kind to us, that people are going to look at us differently and treat us differently. From my own personal experience, I've found that hasn't been the case. I've found that young people, older people have been extremely kind and generous. Whenever I'm out in public, I find that people are wanting to help and are keen to help. In my experience in schools, young people are wonderful and they are kind and caring and compassionate.

And I think that young people with spinal cord injury may well be quite fearful of the way in which their peers and their teachers approach them or treat them. From my experience, I think that they'll find that they'll be pleasantly surprised. They'll find that their peers would love to see them back at school. Their peers love to help. I know that when I visit my school, the children there are happy to see me and my staff are as well. And that surprises me. I too had those fears and have found that to be quite unfounded. 

I guess I would say that in my experience, and I'm sure this would happen for other young people with spinal cord injury, when they go to their school, just being there, being who they are and demonstrating to their peers, their teachers, their school community that they're there and wanting to learn despite their spinal cord injury, it inspires them, inspires other people and they'll have a very positive impact upon their school community.

Anna-Marie: (27:36 - 27:51)

And finally, there will be good and bad days, but it's really important not to miss out on opportunities to engage and become part of the school community. He says doing so may even open many new doors that may haven't been previously possible.

David: (27:52 - 28:42)

I guess anyone with a spinal cord injury, any parent of a child with a spinal cord injury knows that it's not easy. You have your good days and you have your bad days. I think that engaging with school, engaging with learning, there are so many opportunities for young people with spinal cord injury that they shouldn't be thinking that because of their injury that their life can't be as full and rich as those without disability. In fact, there may be many doors open to them that may not have been open to them before. Yes, it's scary. Yes, it's challenging, but pushing through, being brave, talking early with your school, finding ways to make that pathway smooth has huge rewards.

Anna-Marie: (28:45 - 29:42)

And that ends this podcast on school life. And you've just been listening to guest David Deitz, a school principal from Smiths High School in Wollongong, and Hayley Slocum, who has lived experience of childhood acquired spinal cord injury. She's an athlete, a scholar and works with the New South Wales Wheelchair Sports.

You've been listening to Spine Care's 40 Voices for 40 Years, produced by 2SEI Radio. You can subscribe wherever you get your podcasts. This series is recorded in Sydney. We acknowledge the Gadigal people of the Eora Nation as the traditional owners and ongoing custodians of the land where we record this podcast. We extend our respect to the traditional owners of the lands that you and our guests join us from. I'm Anna-Maria Reyes. See you in the next podcast.

(MUSIC OUT)