Collaboration: Interviewing a Disability Carer/Sibling

Posted in Current Updates and Recent Life

Happy November first! At the end of this month, I’ll be celebrating my one-year blogiversary. To mark the occasion, I’m hoping to write a Q&A post on my blog where I answer any and all of your questions for me. So, if you have a question about me, my life, the things that I like, or anything else, then head on over to my Instagram and ask the question here: https://www.instagram.com/p/CG-cdkBpf3R/. Or, if you don’t have Instagram, you can email me a question for the Q&A at: thewheelchairteen@gmail.com or ask it in the comment section below (don’t forget to specify that your question is for the Q&A).

Me and my sister Olivia-Savannah

But for now, I’m excited to be bringing you the very first collaboration on my blog! When I’m at home, I’m able to do most things by myself – but there are certain tasks such as preparing my own meals or taking a shower that I am unable to do because of my disability. Therefore, my older sister, Olivia-Savannah, has to provide me with assistance to complete these tasks throughout the day. I’m going to be interviewing Olivia-Savannah about what life is like for her as the primary carer for her disabled sister. Olivia is also a seasoned book blogger and has a successful YouTube channel (she’s been doing this much longer than me!)

Hello, Olivia-Savannah! Thank you so much for agreeing to be interviewed. As you know, you are my third-eldest sister and the family member that helps me out the most with all of the practical tasks that I require assistance for since our other two sisters have jobs in England. You therefore often act as my primary carer. I’m going to ask you ten quick questions about what it’s like to be both a sister and a carer:

1. What are some of the tasks that you have to do for me?

These really differ! I tend to help you by preparing food such as breakfast and lunch during the day. I also help you with getting dressed, washed, and bathroom trips sometimes. I think those are most of the things I help you with, because you actually do quite a bit yourself as well.

2. How do you think being my carer affected our relationship as sisters (Do you think our relationship would be different if you weren’t)?

Another picture of me and my sister

It’s kind of hard for me to imagine what our relationship would be like if it were different! I do think it means we get closer as sisters just because it causes us to spend a lot of time together. But I equally like when we make time to spend with each other that has nothing to do with caring. I like to believe we’d be just as close. It does mean we see the best and worst of each other though.

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3. What’s your scariest memory of me and my disability?

I think my scariest memory is when I was told that you were losing the ability to walk. You weren’t there with me since it was just our parents telling us sisters, but it was scary because I was young and it was the first time that I realised there was nothing I could do as a carer that would be able to help with that;  that was a difficulty and challenge you’d have to face yourself.

4. What’s your fondest memory of me and my disability?

Me and my sister having fun at a swimming pool

My fondest memories are when we defy the odds together! I remember when we were so excited to go on a rollercoaster that was newly built in the Efteling (a rollercoaster park in the Netherlands) and then they said that with your disability you couldn’t go on. We were both devastated – but after an emotional moment we went off and made our own fun. I like the moments when something isn’t wheelchair friendly, but then together, we find a way to navigate it. Or simply forget about it completely and make our own fun. Seeing you smile after a disappointment like that always makes my heart warm because I know I helped in making that frown turn upside down.

5. How does it feel when you still have to care for me even when we’re fighting?

Well, this makes it tricky! It’s always hard when you have to be around someone when you’re not in the mood to be. But in the end, I feel like the emotional aspect of fighting is irrelevant, because care is a requirement and needs to be done. I usually end up being quiet in those moments so as not to stoke the ‘fight’ further, but to make sure you get the care you need. I feel like any fights are best done when we can both express our emotions without caring being a part of it.

6. What are some clever methods/practises that you created to make caring for me easier or fun?

Well, we made ‘poses’ with funny names which meant getting into various positions. Those were positions which made it easier for me to lift you, or help you do something. Naming those positions things like ‘model pose’, ‘crawling pose’ or ‘bomb pose’ made them more fun for us to do when we were both younger!

Nowadays, we use the moments that I care for you as a time when we can have fun conversations together: sometimes we talk about something happening in our day, something we’ve read or watched, or we speak Dutch so we can both practise the language. It’s just a chill time together!

7. How has having a disabled person in your life changed you and your perspective on the world?

Me, Olivia-Savannah, and our other sister Tamara walking on a pavement in Malta

In a practical sense, I spend a lot of time staring at the pavement! I’m always thinking things like: “this pavement wouldn’t be good for pushing Simone on” or “Simone wouldn’t be able to get into this building because the step is too big”. It’s definitely made me more aware of the injustices that disabled people struggle with, and makes me want to work harder and do more to make this world a more accepting and inclusive place for disabled (and other marginalised community) people.

8. What was it like watching the progression of my disease (seeing me go from being able to walk to slowly losing more and more function)?

At first, it was scary. I didn’t know how to help. Especially when you didn’t want help. But I think there was a lot of hope in the moments where I could see you’d be alright, or you managed to think of different ways to do things. In those moments, I realised you’d be alright – even if mentally you might have still been struggling with it. I knew that you’d make it through the progression even though it was hard for you.

9. Because both of our parents are carriers of the gene that made me disabled, there is a chance that your children could have my disability or a more severe version of it. How do you feel about this?

I’m only 21! I haven’t thought about this that much, to be honest. But either which way, I’m not too worried. I mean, you are amazing as you are. And you never know what a child will be like when they’re born – there are so many disabilities, mental illnesses/conditions, personalities… having a child is definitely a foray into the unknown. The most important thing is being willing to care for and love your child regardless of any of those things, and I would be up for that.

10. Is there anything more that you would like to say?

Me and my sister together on a fun day out

As a reader, it’s so important to learn about people’s experiences from them. I hope you can appreciate Simone’s blog for that purpose and it can help make you think about inclusivity more too. Also, to you sis: thanks for having me on board. I hope you realise what a blessing it is to be your sister.

If you want to see more of Olivia-Savannah, you can find her on these social medias:

Published by The Wheelchair Teen

I am a black, disabled teenager and my blog shares my personal experiences, some of the struggles and triumphs I’ve been through, as well as posts that educate people about disabilities to help end discrimination against disabled people.

58 thoughts on “Collaboration: Interviewing a Disability Carer/Sibling”

  1. Happy November 1 to you too. What a heartwarming interview. Very happy to hear that your sister is so supportive of you. You will go very far. Keep up the good work. Love and hugs. ❤️🧡

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  3. What a lovely interview to read!! I love that your relationship with your sister is close and that you two have so much fun together, that Olivia is both your sister (and friend?) and your caretaker. And wow @ the question about children! Just yesterday my partner asked me about that, because of my autism and ADD, will my siblings (I have a brother and a sister, and both want children) have higher risk to have children who are also autistic and/or have AD(H)D. I loved Olivia’s answer. Great pictures of the two of you too!

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    1. I’m happy that you enjoyed it! 🙂 Olivia-Savannah is definitely my best friend as well as my sister and caretaker – we have so much fun together and ocassionaly freak each other out with how well we know each other. Wow, that really is a coincidence! It’s a question that I often wonder and ask my sisters about – I think in situations like yours and mine, it’s natural to be curious about it.

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  6. Olivia is a lovely person, I already knew that. But now I have confirmation 😉.

    Great idea to interview her, because even if – as a sibling – she’s probably more likely not to feel burdened by helping a disabled person, on the other hand she’s more affected by it than an ordinary caregiver would be, I mean emotionally, so it probably makes things harder for her. I think both of you provided a useful and heartwarming perspective!

    Also, happy blogoversary in advance! I always love to visit and hearing what you have to say, and I learn a lot from your blog.

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    1. Thank you, I’m truly happy that this blog has helped to teach you something. It really helps motivate me to post every week when I see your amazing comments all the time. I’m looking forward to my blogiversary, and I won’t forget that you’ve been along with me during almost all of my blogging journey. I always appreciate your support and I love reading your blog too. I’m happy that you liked the idea for this post – I had a lot of fun sorting it all out with Olivia!

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  10. Excited to discover your blog. And follow you on your journey!! Never let your disability define you!!!

    My 14 year old daughter and I are friends with a mother daughter team. The daughter Jordan was born with a disability. She’s been unstoppable and changing the world. You might want to check out their blog/website and story. Bornjustright.org

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  12. Thank you so much for interviewing me and having me over on your blog sis! I can’t wait to edit our video together and have that one go live later this month as well x A question for the Q&A: If you could tell one thing to your younger self, what would it be?

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  13. That was a beautiful interview. It’s so heartwarming to see how supportive and kind your sister and family is. Both of you are incredibly inspiring and have such a positive aura! Thank you for sharing! I loved reading and thinking on this.❤️

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    1. Thank you so much, I’m truly happy that you enjoyed the post. I am quite lucky – Olivia is a great and caring sister to have. Well, we both have an incredibly inspiring mother, so that’s probably where our positive aura comes from 🙂 Thank you for commenting.

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  14. This was a great interview. You and your sister have a beautiful relationship. Your love for each other really shines through. Thank you to both you and your sister for sharing 💜

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    1. I have no idea. They’re my everything and really help to pull me up and provide me with the love that I need to propel me forwards. Thank you for complimenting my dimples! And I’m happy that you were able to learn something from this post. 🙂

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  18. Very interesting and informative interview. I was a carer for my quadriplegic husband for nearly twenty years. I also was a full-time student for several of those years. When I got a teaching job, we also had hired help. Taking care of a quadriplegic is usually a full-time job for two people. As you and your sister do, we talked a lot and knew each other very well. We also went places together and traveled a lot until we adopted our children. We visited both England and the Netherlands. You are coping beautifully with your disability. There is no reason you can’t live a satisfying life! All the best!

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    1. Thank you! You must be able to relate to my sister quite a lot then, wow, you were basically a disability carer/wife. It confounds me that you were also a full-time student. It seems to me like whatever you and your husband wanted – you simply went out and did it and you didn’t let anything stop you – which is incredible. You always found a way. Thank you for sharing ❤

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  19. “In time of test, family is best.” – Burmese Proverb. Your such a beautiful soul and so is your sister. I hope the best for you and your family. Keep smiling ❤

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  21. Hey I found this blog idea to be so amazing, interviewing your sister is a great way for us to get an outsiders perspective. Its so great to see such a close friendship between siblings, its so wonderful that she is your primary career. I cant wait to see your Q&A post I love learning more about bloggers in personal level it really helps me to see there personality and create a great bond.
    Just want to remind you that Jesus loves you

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    1. I’m happy that you enjoyed it so much! Thank you so much for your positive words. I’m looking forward to the Q&A post too. I talk a lot on my blog about my past – but not a lot about myself so it’ll be something different. Thank you ❤

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    1. Thank you so much for the nomination! I love your questions so I’ll definitely accept it. I must confess that I have a rather packed schedule including other nominations so it might take me a while to get to it but I definitely will eventually.

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  24. what a great interview — the 2 of you are amazing in so many ways but what comes to mind first is how fearless you both are, taking things head on & meeting them, rather than pretending things are different, pussyfooting — would you be so kind as to guest blog post for my site? if you’re so inclined, here’s a link to general guidelines: https://wp.me/p6OZAy-1eQ

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    1. I’d love to! Thank you so much for the invitation. Is there anything in particular that you’d like me to write about? If not – I’ll have a think about it and email you an idea this weekend. Don’t worry, I read the guidelines and I think that I’ll have no problem sticking to them. Thank you, there’s not much point pretending that things are different for us – this is the life that I’ve been given and we both have had to adapt and find as much joy as we can with the situations that we have. And if we both come across as fearless – we probably get it from our amazingly strong parents. ❤

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  26. Your family is so supportive of each other. It’s easy to see where your passion for helping the world be a better place comes from. Thank you for sharing this part of your story, it is encouragement to be open about who we are and the relationships we have with those closest to us.

    Peace to you and your family.

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    1. Yes, it definitely comes from them and how much they’ve helped me. You’re welcome, I’m happy about the positive impact that sharing about me and my sister’s relationship has had on those who read the post. Peace to you and your family too!

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