Empowerment and Advocacy – supporting a vulnerable adult and child (workshop) facilitated by Andy and Andrew
Empowerment – means people having power and control over their own lives.
Advocacy – means getting support from another person to help you express your views and wishes, help you stand up for your rights.
At the workshop Andy and Andrew shared with the group the story of their sons’ diagnoses and what they had done to advocate for and empower their sons. Andy’s son (17 yrs), was diagnosed aged 10 and Andrew’s son (13 yrs), was diagnosed aged 9. Others at the workshop then shared their experiences and challenges. What follows is a summary of what has worked for others, rather than detailing personal experiences.
- Stand-up, Speak-up and Don’t Give Up. It can be challenging being an advocate, you are often told ‘no’ by those in authority and you frequently face setbacks. Despite, this try and hold your nerve and keep going.
- Be open, measured, and assertive. Be open to what you are being told, respond in a considered way. Be assertive by using ‘I/he’ statements when advocating, state what you want in simple sentences, value the rights of the person you are advocating for. Be confident and remember that you are the expert in your own child/person you are advocating for.
- Advocating for a young adult (over 18 years). It is not uncommon for a young person to disengage and not be interested in seeking support for KS/XXY related issues. It is important to respect their choice but, just because they have disengaged, it doesn’t mean you have to. You can continue to read about KS/XXY and talk to others with KS/XXY and their advocates. Keep an open mind, the person you are supporting might decide to re-engage at some point in the future.
- Self–Care – Being an advocate may be stressful so having the support of others is important. This could be from a partner, family member, friend or through an organisation such as KSA. Try to take time for yourself – it can be as simple as going for a walk.
- Get the most out of meetings – Take notes of everything, this means you can hold people to account for what they said they would do. Summarise the key points to the people you are meeting with, they are probably dealing with many cases, they may have had several meetings that day already. Don’t be afraid to take a break during meetings, this gives you and the people you are talking to time to reflect.
- Wider support – Support is available from charities and other organisations too. Barnardo’s , Contact and Clinical Partners were three suggestions made, but there will probably be other organisations in your local area.