Down Syndrome International
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With Us Not For Us

Our campaign

On World Down Syndrome Day 2023, we are calling for a commitment to

With Us Not For Us

A human rights-based approach to disability

The message of With Us Not For Us is fundamental to a human rights-based approach to disability.

Our network is committed to moving on from the outdated charity model of disability, where people with disability were treated as objects of charity, deserving of pity and relying on others for support.

A human rights-based approach views people with disabilities as rights-holders who have the right to be involved in decisions about their lives, working in partnership With others to improve their lives.

Our global network of people with Down syndrome calls for anyone in a support role to commit to be With Us Not For Us.

The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD Article 3) calls for:

‘Respect for individual autonomy, including the freedom to make one’s own choices’

Despite this, people with Down syndrome often have poor or controlling support. Often their support people do things For them not With them.

Our global network of people with Down syndrome calls for all organisations to commit to including people with Down syndrome and being With Us Not For Us.

The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD Article 4) calls for:

‘Persons with disabilities, through their representative organisations, should be consulted with and actively involved in the development and implementation of all legislation and policies related to them’

Despite this, many organisations exclude people with Down syndrome from participating in their work. They take decisions For them not With them.

Our global network of people with Down syndrome calls for decision makers to commit to involve OPDs representing people with Down syndrome in all decisions, and work With Us Not For Us.

Down Syndrome International and its members are Organisations of Persons with Disabilities (OPDs), meaning we represent and work With people with Down syndrome, not just For them, like many charities and civil society groups.

The United Nations Committee on the Rights of Persons with Disabilities (UN CRPD General Comment 7) highlights the importance of:

‘The involvement and participation of persons with disabilities through “representative organizations”, or organizations of persons with disabilities’.

The Committee also states that:

‘Organizations “of” persons with disabilities should be distinguished from organizations “for” persons with disabilities’

Despite this, OPDs representing people with Down syndrome are often excluded from decision making processes.

So, what can you do?

We are putting together guides for advocates, schools and organisations to help you think about ‘With Us Not For Us’ in your daily life.

We are also creating a fundraising pack so if you want to take the opportunity to support a Down Syndrome organisation we can help with that too.

In the meantime, you might like to sign up to our Advocates mailing list to learn more about advocacy. Together we will create a single global voice advocating for the rights, inclusion and well being of people with Down syndrome.

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Become a World Down Syndrome Advocate!

Join Down Syndrome International (DSi) in our campaign to create a single global voice advocating for the rights, inclusion and well being of people with Down syndrome.

Each year the voices of people with Down syndrome, and those who live and work with them, grows louder.

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