Equality Now!

Spina bifida and Hydrocephalus Awareness Week

25th - 31st October 2020

What is spina bifida?

Spina bifida is a condition which affects about one in every 1,000 children born per year in Ireland. Ireland has one of the highest incidences of spina bifida births in the world. Spina is the most common neural tube defect (NTD) which causes incomplete development of the spinal cord. Translated, ‘spina bifida’ literally means 'split spine'. Spina bifida commonly causes significant mobility issues, continence problems, pressure sores, and social challenges of isolation and loneliness.

 

You can find out more about spina bifida by clicking here.

What is hydrocephalus?

Hydrocephalus is a condition where too much cerebrospinal fluid builds pressure in the brain, this is usually relieved by a shunt (a rubber tube) which is fitted internally to drain the fluid away into the stomach, or sometimes the heart. 1 in 1,000 pregnancies are affected by hydrocephalus each year. Hydrocephalus is often referred to as a hidden disability due to the lack of obvious physical signs in most cases. Common issues arising from hydrocephalus include intellectual difficulties, behavioural problems, memory issues, and challenges to cognitive processing.

 

You can find out more about hydrocephalus by clicking here.

About Spina bifida and Hydrocephalus Week...

Spina Bifida Hydrocephalus Ireland (SBHI) is a national organisation that supports individuals living with spina bifida and/or hydrocephalus (SB/H) in Ireland. It is our mission for Awareness Week to put disability issues at the top of the political agenda. In September, we ran our Political Brief to Government campaign in collaboration with our Adult Advocacy Group which set out the actions that newly elected representatives could take to support those living with spina bifida and hydrocephalus. These actions were detailed under the following key themes:


1. Ensuring equal rights
2. Right to adequate health services
3. Right to a life in the community
4. Right to access
5. Right to education
6. Right to employment

 

To date, we have still not heard back from the Government regarding our concerns. Our members feel as if their voices are still not being heard by our Government. In this new video series, our members revisit their call to Government from our Political Brief campaign and ask for nothing less than Equality Now!

Read our Awareness Week press release by clicking here.

Marcus

Living independently and being included in the community

Living independently and being included in the community✏️Article 19 of the UNCRPD states that people with disabilities have the right to live independently in the community. Countries must ensure that people with these conditions can choose where they live and with whom they live, and that they are provided with the necessary supports to do this.

Seán

Accessibility

Accessibility✏️Article 9 of the UNCRPD states that; people with disabilities have the right to access all aspects of society on an equal basis with others including the physical environment, transportation, information and communications, and other facilities and services provided to the public.

John

Health

Health✏️Article 25 of the UNCRPD states that people with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination. Countries must take all appropriate measures (including measures that are gender-sensitive) to ensure that people with these conditions have access to the same range, quality and standard of health care that is available to everyone else, and which are close to people’s own communities.

Jane

Work and employment

Work and employment✏️Article 27 of the UNCRPD states that people with disabilities have the right to work, including the right to work in an environment that is open, inclusive, and accessible. Countries must take appropriate steps to promote employment opportunities and career advancement for people with these conditions.

Mary

Education

Education✏️Article 24 of the UNCRPD states that people with disabilities have a right to education without discrimination. Countries must ensure that people with these conditions can access an inclusive, quality, and free primary and post-primary education in their own community.

Noeline

Living independently and being included in the community

Living independently and being included in the community✏️Article 19 of the UNCRPD states that people with disabilities have the right to live independently in the community. Countries must ensure that people with these conditions can choose where they live and with whom they live, and that they are provided with the necessary supports to do this.

Charter of rights for individuals living with spina bifida and/or hydrocephalus

Become a self-advocate!

 

As part of Spina bifida and Hydrocephalus Awareness Week, SBHI has developed this Charter of rights for individuals in Ireland who are living with spina bifida and/or hydrocephalus (SB/H). Please note that this is not a legal document. The purpose of the Charter is to provide an overview and highlight the rights that individuals living with SB/H have in society whilst accessing relevant services.

 

Read the document below or click here to download.

How can you support those living with spina bifida and/or hydrocephalus?

 

You can still contact your local TD and put disability at the top of our Government's agenda. You can find your local TD's contact details by clicking here and navigating to the ‘How can you support us?’ section.

 

Once you have found your TD and their contact details, you can email them using our email template as a guide. Click here to download our email template and simply copy and paste the text into an email. 

 

We hope you have a fantastic #SbhAwarenessWeek2020 🙌 You can celebrate the week by raising awareness in your own unique way and tagging us in your social media #awareness stories📸

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TAKE ACTION

Take the disability awareness quiz...

TAKE ACTION

Here's an easy way for you to contact your TD so that we can see real, lasting change start to happen...

TAKE ACTION

We always need volunteers to support our activities and fundraisers to keep our service going.

To get involved please fill in the form here...

ABOUT US 

We are Spina Bifida Hydrocephalus Ireland (SBHI). We are the national organisation for everybody living with spina bifida and/or hydrocephalus across Ireland. The Equality Now website is the hub for our campaigning and advocacy activities. Thank you for visiting and please to get in touch if you need more assistance.

 

You can find out more at: www.sbhi.ie

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CONTACT

T: 01 457 2329

E: info@sbhi.ie

© 2018 SBHI

Reg. Charity No. 20009366