Kimber – “Advocating as a sibling”

Siblings are typically the most consistent advocate for their disabled brother or sister throughout their lives. Many siblings do advocacy without even realising they’re doing it – whether that is young siblings advocating for their disabled brother/sister to be included in activities as children, or adult siblings pushing service providers to do better. Despite falling into advocacy, advocating for your own needs and knowing how to advocate in a way that gets the most effective results can still be a big challenge for siblings.

What is advocacy?

Advocacy is coming to someone with that “ask”, or something that you are asking them to change or do differently.

Advocacy is all about speaking up and voicing your needs – these might be your own needs that you are speaking for, or your disabled brother or sister’s needs. For example, this might look like asking a service provider for a change in the type of support your brother or sister is getting, or it could look like advocating for your own needs, like mental health support.

Who might siblings need to advocate to?

Siblings deliver advocacy across many different areas of their lives, both to people within and outside of their families. This might include:

• Peers: The first exposure to advocacy for many siblings at a young age is often advocating to other kids in the community – young siblings often do advocacy without realising it by encouraging their friend groups to include their disabled brother/sister, or by standing up to a bully at school.
• Professionals: For adult siblings, they are often in a role where they need to advocate to professionals. This might be advocating to service providers for better support for your brother/sister or advocating to their GP for better care. This could also be advocating for yourself to professionals – asking for help with accessing respite, other support, or mental health care as a sibling.
• Parents: Advocating to parents can be one of the biggest challenges for siblings. Generational differences mean that it is very common that siblings have a different idea of what is best for their disabled brother or sister than their parents do. Siblings often want to push their parents to have bigger goals for their brothers and sisters, but fear crossing a line and are not sure if it’s their place to advocate within their own family.

Regardless of who siblings are advocating to, the general approaches are typically the same if you are advocating for yourself or for your disabled brother or sister.

Advocating for yourself

Siblings are often used to putting their own needs second to the needs of their disabled brother or sister, which can make advocating for your own needs feel foreign or uncomfortable. Many siblings feel guilty advocating for their own needs when they see their disabled brother or sister’s needs as bigger or more pressing.

It’s helpful to remember that it’s difficult to be a good sibling or good supporter when you’re running on empty – siblings should never feel guilty about asking for the support they need! You might need to advocate to your parents or other family members, to professionals, or to others in your community for your own needs as a sibling, a supporter, and a carer.

Some strategies for siblings advocating for themselves are:

1. Prioritise your needs. Even if you are used to putting your own needs aside in favour of your brother or sister’s needs, remember that your needs matter! There’s no guilt or shame in voicing your needs and asking for the support you deserve.
2. Understand your ask. When siblings are used to not being prioritised, it can be difficult to know what you can ask for or what support you need. As you get ready to speak up and voice your needs, narrow down what you want and what specifically needs to happen to support your wellbeing. Clear asks are the most successful asks. Peer support groups, friends, and other siblings can be helpful sounding boards for figuring out what kind of help or support would be most useful for you.
3. Understand your entitlements. With laser focus on their disabled brother or sister’s needs, many siblings don’t know what they themselves are entitled to. For example, someone in a primary care role may be entitled to respite services to give them time to themselves to recharge – service providers typically won’t tell you what you’re entitled to, so come armed with the information about your rights and entitlements ahead of time.
4. Don’t take “no” for an answer. Family advocates are used to hearing “no” when navigating services or social care. Knowing what you are entitled to means that you’ll be better able to understand when “no” really means “no”, or when you should keep pushing for what you deserve and are entitled to.
5. Find allies. Other siblings understand best what you are going through and what support you need. This might mean starting a conversation with your non-disabled siblings about your shared experiences and how to ask for what you need, or this might mean connecting with organisations like Sibs to find siblings in other families to talk to and share advocacy strategies.

• Click here to join a Sibs adult sibling support group.
• Click here to join Sibs adult sibling Facebook group, #Siblife.

Advocating for your disabled brother or sister(s)

For siblings in a care and support role, interacting with professionals like service providers, social workers, GPs, and others engaged in your disabled brother or sister’s care.

This isn’t necessarily limited to adult siblings. Young siblings are often advocating to teachers, school administrators, and school peers in education settings. Siblings often feel pressure not to stand up to these professionals. The name “professionals” implies that they know best – but ultimately sibling advocates know their disabled brother/sister better than professionals ever could and should feel empowered to speak up when something isn’t working.

Some strategies for siblings advocating for their disabled brother or sister are:

1. Remember that you are the expert. Siblings understand their disabled brother and sister best. As their peer and a lifelong supporter, you understand their wants, needs, goals, and dreams better than a case manager or service provider ever could. While you can respect professionals as an expert in their field, you are the expert on your brother or sister and should walk into any meeting expecting to be respected for that knowledge and expertise. Seeing yourself as an equal expert is the first step in getting comfortable with raising your voice to professionals.
2. Understand the system. Care systems and health care systems are complicated and difficult to navigate – often, they are designed to be this way! Having a good understanding of how the system works and how the pieces fit together helps siblings enter the conversation with enough knowledge to go toe-to-toe with professionals and feel more confident. Sibs guides can help with understanding elements of the system.
3. Know your disabled brother or sister’s rights. Your brother/sister has rights at a national and international level for the type of care and support they need to be provided with and the way they need to be included in their community. Using the language of “rights” can be a very effective way to push professionals to deliver the kind of care and support your sibling deserves.
4. Know when to escalate. Advocacy for your disabled brother or sister will typically involve a lot of pushing. Starting at the level you have access to (for example, a GP or a support worker) is your best entry point, but if you are not making progress at that level it can help to decide when you will escalate the issue to the next level.
5. Find allies. Other siblings understand best what you are going through and what support you need – this might mean starting a conversation with your non-disabled siblings about how to push for better care and support for your disabled sibling, or this might mean connecting with organisations like Sibs to find siblings in other families to talk to and share advocacy strategies.

• Click here to join a Sibs adult sibling support group.
• Click here to join Sibs adult sibling Facebook group, #Siblife.