The purpose of this toolkit is to raise awareness and to provide information for Church leaders, Church workers and Chaplains to assist them in gaining a better understanding of issues relevant to people with Down's syndrome.

What is this toolkit for?

People with Down’s syndrome are different from one another, just as all people are. The most important thing we can do, therefore, is to get to know every individual as a person; this goes for family and carers as well. It is our privilege to support them in establishing real relationships within the church and in participating in school life. Once we really get to know those with Down’s syndrome in our congregations and schools all the issues around inclusion and support follow naturally; we will be thinking about them and their needs as valued members of our communities.

We hope that this toolkit will help us all to achieve the goals of welcome, participation and celebration of people with Down’s syndrome.

This toolkit has been prepared for the Mission and Public Affairs (MPA) Council of the Archbishops’ Council by MPA staff. 

Download the full PDF version

A Word on Terminology

It can sometimes be difficult to know which words and phrases to use and which to avoid in talking with or discussing the aspirations and needs of people with Down’s syndrome. Below are a few common examples of ways in which we can change the way we talk which we hope will be helpful. 

Things not to say

Preferred terminology

Risk of having a child with Down’s syndrome

Chance/probability

Abnormality/problem/disorder/disease

Difference/variation/condition

Good/bad/difficult news

Expected/unexpected or different news

Normal

Typical/typical development

Suffer

Have/living with

A Down’s syndrome person

A person with/who has Down’s syndrome

Mental handicap

Learning disability/difficulty

Diagnose

Identify

Severely disabled

Complex needs

Throughout this toolkit we refer to ‘a child or person with Down’s syndrome’, not ‘a Down’s syndrome child or person’. This is preferable as it demonstrates to all, and especially those with Down’s syndrome or their parents/carers that we understand that the person is a person first, last and always and as such is equally valued with all other persons in our communities.

‘Down syndrome’ or ‘Down’s syndrome’?

There is some discussion about which term better reflects John Langdon Down’s identification of the condition. In practice, in the UK the term most commonly used is ‘Down’s syndrome’ In the rest of the world and in most current research, however, ‘Down syndrome’ is preferred. In this toolkit we employ the UK usage throughout. Finally, we can get too worried about using the ‘right’ language at times. It is the spirit in which the words are said rather than the actual words we use that matters most. If we are unsure, we can always just ask!

A Theological reflection
Understanding Down’s Syndrome
Some Positive Changes in Attitude Towards People with Down’s Syndrome
Historical and current challenges
Support During Pregnancy and Birth
When a baby with Down’s syndrome is born
Participation in Pre-school Provision and Clubs
Participation in Education
Participation in Church Life
Faith Stories
Employment and Volunteering
Relationships and Marriage
Older Adults
Supporting People Living in the Community

Six things you could do now

  1. Share the toolkit with other members of your church and its leadership (and promote it on social media) 
  2. Prepare a sermon - either about the theology of disability, OR on any topic but with visual prompts and key concepts made accessible for a member of your congregation who has Down's syndrome
  3. Have a conversation with a member of your congregation who has Down's syndrome about what is working and what could be improved in church life OR make a link with a community group that supports people with Down's syndrome and investigate some form of joint working that meets the spiritual needs of their group. 
  4. Make contact with local groups outside of church that support people with Down’s syndrome (youth group/special school/residential college, assisted living services) and ask how you could support them.
  5. Read a book by Jean Vanier and/or Prof. John Swinton on disability.
  6. Speak to your church leaders about support and training regarding inclusion of people with Down’s syndrome.

Source URL: https://www.churchofengland.org/faith-action/valuing-people-downs-syndrome-toolkit

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