Story about two sisters and experience of growing up with a sibling who has an intellectual disability.
This article is the common version of a story told in the Europe for us magazine about siblings of people with intellectual disabilities.
Aoife McGarry is a former Policy Trainee at Inclusion Europe. She is the oldest of three siblings. She has a brother called Conor and a sister called Róisín.
This Q&A artice reflects on the relationship between Aoife and her sister Róisín who was diagnosed at three years old with autism, intellectual disability and ADHD. Aoife was 13 years old when Róisín was born. Róisín is now 13 years old.
Sisters’ relationship
Was it difficult to understand and bear each other?
We have our way of communicating. I think that we understand each other very well now but at different stages it was difficult. For example, when Róisín was a toddler I don’t think she understood why I was a moody teenager. And it took me time to understand how to communicate with Róisín in the way she needed.
Have you always had a good relationship with your sister since the beginning?
Yes, we think so. I was so excited to have a sister and for years before Róisín was fully verbal and had the confidence she does now – me and Conor were her best friends.
Did it worsen or got better over the years?
Over the years the hardest thing has been that we are at such different stages of our lives. This meant that I had to leave home for university when Róisín was only 6 years old. This made our relationship different, and I think it was really hard for Róisín to understand that I wasn’t leaving her. Now I think she understands that I will always come back.
What was the most difficult thing/moment to overcome with your sister?
Learning how to cope with Róisín’s behaviour. Because I was so much older, I acted in a caring role for Róisín since she was a baby but at the same time, I was only a teenager, and I didn’t have the skills or understanding of how to manage her meltdowns. It was confusing because I knew that I am one of the people who knows her best so why couldn’t I help her when she was distressed? We overcame this together through a lot of education and different therapies. This isn’t to say that now I am perfect or that Róisín doesn’t have meltdowns, but I feel like I can manage them better and be there for her so that she feels safe and heard.
How is your relationship with your sister now?
We are very close. Even though we don’t live together at the moment we talk on the phone a lot. Róisín will facetime me while she does her bedtime routine. We talk about her day, things that might be bothering her at school or elsewhere and then she reads her books to me.
Future
How and where do you see yourself and your sister in 10 years?
In ten years Róisín will be 23. I hope by then she will be getting the opportunity to study or train in a career that she wants for herself. I see myself living nearby to Róisín so that I can always be her advocate and support when she needs me.
How important is your sister to you?
My sister means the world to me. As a family we always say that we don’t know what we even did with ourselves before Róisín came along. I remember when my mam was pregnant, I begged her to let me choose the baby’s name and when she was born, I choose Róisín which means ‘little rose’ in Irish because she was so small and beautiful. I always think of her as my mini-me, my best friend and she’ll always be number one to me. She changed my life, even putting me on a career path that I don’t think I would have gone down and I am so grateful because I don’t think I would have found something so fulfilling otherwise.
Róisín’s impact on Aoife’s life
How has your life changed because your sister has an intellectual disability (in terms of career, freedom, communication, education, independence, life perspective, etc.)?
I suppose my life changed in a practical way at first. I knew that when my mam was pregnant there was a change coming to all our lives but of course I didn’t really grasp how it would impact my life overall. When Róisín was born it changed my level of responsibility but in a positive way. Mostly, I was excited to have a new sibling, a sister and I was happy to help. I really fell in love with my sister when she came into the world.
When she was diagnosed with autism, I was about to turn 16 years old. I understood what autism was and that this meant a huge change for our family, but I still didn’t really know exactly what it would mean for us. It has only been through the years of Róisín’s development and my own, that I have come to understand how Róisín’s disability will impact my future. And only by reflecting now can I see how much her disability had influenced my life in the past.
I didn’t have the typical teenage experience with the freedom and gradual independence that a person gets as they grow into an adult. I had a caring role with a level of responsibility that was unavoidable. I think my mam would have preferred if my brother and I didn’t have to take on so much of Róisín’s care but due to her disability: number one; she needed a much higher level of care than a neurotypical child and number two; there was no resources outside our immediate family that could manage her needs.
This impacted my life perspective at a young age. I understood from first-hand experience what it meant to be stigmatised and how if you are not understood by the world the first reaction is to deny you and your reality. From seeing how much of a fight it was to get her rights met by the government like care allowance and even a school place, to how adults around us rejected our company as a family because of Róisín. I became extremely protective of Róisín and I guess I am still like that. With the career path I have chosen, I’m still seeking to protect her. But I have learnt that she doesn’t deserve to be just shielded from the world. Rather, the world needs to change to make space for her and for every child, every person with an intellectual disability.
Róisín’s independence
Do you think that Róisín can get a good education and achieve her dream job?
I think that Róisín’s time in an inclusive school setting has changed my perspective on what she is capable of. Nothing has been predictable in terms of her development. For the first 6 years of her life, we didn’t know if she would ever speak. Now she is fully verbal. She can read and write and most importantly she enjoys doing those things. Because of Róisín’s autism and ADHD I think so much depends on the level of care available to her.
I am worried about the high school she is going to attend. Mostly a fear of the unknown. Having seen Róisín regress in the past, in social situations or in new skills learnt, I worry that if the new school doesn’t or cannot give her the specialised attention, she needs that she will lose her confidence. I want to see her reach her full potential and not just be ‘maintained’ or ‘handled’ in a segregated school.
Do you think that Róisín can get a career and earn their own money?
I think Róisín has a lot to offer the world. I am excited to see what interests she develops as a teenager and an adult. My hope would be that she finds something she is passionate about and can look for an inclusive work environment that would make it possible for her to work and make her own money. It is not fair how many people with disabilities face discrimination in employment and social protection. My hope is that things will be better by the time Róisín is at working age and she can secure work with adequate income support to accommodate her extra needs and costs.
Do you think that Róisín can be independent?
It’s probably too early to tell what Róisín’s adult life will look like. As her sister, I want her to of course aim towards the highest level of independence she can achieve. She will always need extra care and assistance with day-to-day living. Her diabetes type-1 is a complex medical condition requiring around the clock medical attention that she cannot give to herself. Especially when she goes into hypoglycaemia there must be a person there to handle that emergency regardless of how well Róisín learns to manage her condition as an adult. But Róisín is a strong-minded person and I believe she could thrive in a supported independent living situation. It all depends on the quality of the support available.
Lack of support
Which kind of support is lacking in Ireland?
There is really an overall lack of support in Ireland. The lack of financial support from the government feeds into every other area. The cost of disability in Ireland is a basis for poverty and this comes from a fundamental misunderstanding of the lived realities of people with disabilities and their families.
Social protection schemes targeted at disability such as Domiciliary Care Allowance and Disability Benefit are inadequate:
They do not take the realistic cost of disability into account so people with disabilities are always faced with a much higher cost of living than rest of society.
The ‘rules’ around these benefits are discriminatory – for example, a carer receiving carers’ benefit is only permitted to work 18.5 hours a week or they face losing this vital support. A similar situation exists for workers with a disability on income support. It pushes people with disabilities and their families out of the labour market or at least unable to be mobile in the labour market to independently improve their financial situation.
This sort of vicious circle not only puts them at risk of poverty but also leads to social exclusion.
What should be done?
The government needs to take a completely new approach to how they treat the members of society with disabilities. Ireland only ratified the UNCRPD in 2018. I think our mandate as a full party to the treaty should fully inform an overall policy reform of disability policy in Ireland. Change needs to be structural and fully funded by the government to reach all persons with disabilities in Ireland. Too often support is through one-off pilot programs or has to be sought privately.
Do you think that Ireland is going to establish more support?
The latest budget in Ireland saw a bit of an improvement in disability allowance. The threshold for income was increased by 25 euro. So now a person on disability allowance can earn up to 165 euro without losing this allowance. Considering the desperate lack of support for people with disabilities in so many other areas like healthcare, therapies, education and so on. At best this can be described as a small step in the right direction.
How was the process of getting Róisín in an inclusive education school?
Getting Róisín a school placement at all was extremely difficult. The places for children with disabilities are extremely limited and unfortunately, she couldn’t get a place in a school within our community. We had to fight to get her a place, it nearly went so far as to take legal action against the education department in Ireland. Róisín goes to a school in a different county to where we live and has to take a long bus to school each morning. But in the end, we are happy with her school situation since the school she goes to has been so great for her and luckily works under an inclusive education policy. This is not an option for most children with disabilities in Ireland.
Did you experience any discrimination/isolation because of your sister and her disability?
Yes, because there was such an age gap between us, I had experience of what it was like before Róisín and after – and I was old enough to notice the difference. I still strongly remember being a teenager and noticing the difference in how we were treated as a family by the people around us. I was very aware of family and friends pulling away because they didn’t understand Róisín. Out in public I really noticed people’s reactions. At the time it hurt me, and this kind of isolating treatment just pushes families to isolate themselves even more. Now it doesn’t affect me as much anymore and our family’s mindset is ‘let them stare’. But now as Róisín get older and gains more independence I worry about her facing that kind of discrimination and isolation alone.
Aoife’s advice
What is the relationship advice that you would give to people who have siblings who have intellectual disabilities?
I think siblings of people with intellectual disabilities already understand the need to be patient and caring because it’s just what you do so I don’t need to say that. Something I think is forgotten at times is that siblings need patience and care as well. Families sometimes neglect the reality that a sibling of a child with a disability is going through a unique experience. Families and siblings want to feel like a ‘regular’ family, so they don’t address the fact that siblings are dealing with many adjustments and experiences that their friends and peers are not. This can be scary and confusing. My advice is to seek support in your experience as a sibling of a person with an intellectual disability. This could be a support group, a therapist or just someone you trust outside the immediate family.
What kind of best practices you learned at Inclusion Europe are you hoping to bring back home with you?
As a sibling I sort of just took for granted that I would be Róisín’s carer for the rest of my life. I believed she would be fully reliant on me and my brother and really, I worried about how this would work. From working with Inclusion Europe, I think I take back with me real hope that Róisín will achieve a level of independence I hadn’t considered before. I will always be there for her but now I get to think of a future where she is more my sister than my dependent.