Inclusion Now Magazine 60 Autumn 2021 by ALLFIE

Autumn 2021 Issue 60 £2

A VOICE FOR THE INCLUSION MOVEMENT IN THE UK Tanni Grey-Thompson Interview with ‘Our Voice’ project participants p9

Making a Difference Gypsy and Traveller Children and Young People p 14

UKDHM UK Disability History Month 2021 p18

Inclusive Practice The role of academics p21

Judy Heumann:

“Unless all Disabled people are liberated, none of us can be liberated.”

Legal Question p25

Contents 3 9

Interview: Judy Heumann

Editorial

Interview: Tanni Grey-Thompson

This issue kicks off with two interviews given by prominent Disabled people, both reflecting on their early educational experiences and the need for inclusive education.

'Crip Camp' film and more

Young person’s project

Friends, Families and Travellers By Billie Dolling

UKDHM

Inclusive Practice

Legal Question

UK Disability History Month 2021 By Louise Arnold

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On page 3, we hear from veteran US campaigner, Judy Heumann, describing her lifelong fight for the rights of Americans with disabilities. If you want to learn more about Judy's remarkable career, be sure to watch the film, "Crip Camp". On page 9, the spotlight falls on Baroness Tanni Gray-Thompson, distinguished Paralympian, TV personality and member of the House of Lords. Following this summer's Olympics, members of ALLFIE's Our Voice Project ask Tanni about her life and public attitudes to disability both inside and outside the sporting arena. In Billie Dolling's article (page 14), we hear about the struggles for educational inclusion within the UK's Gypsy and Traveller community. This November it's Disability History Month and, on page 19, Richard Rieser introduces this year's twin themes: the right of Disabled people to have family relationships and to express their sexuality; and the difficulties forced upon those with hidden impairments. The UK Government has a habit of signing up to international agreements that it doesn't understand and doesn't mean to implement. On page 24, Louise Arnold reflects on our Government's failure to promote inclusive education and progress towards a more inclusive society, focusing on the part that academics can play in bringing about change We end this issue with our regular legal question: this time from a grandmother seeking an EHC Plan and appropriate educational support for her grandson.

By Mike Lambert

(ALLFIE Trustee and Editorial Board member)

Cover image/Thumbnail Page 3: Judy Heumann portrait

Interview

Judy Heumann: “Unless all Disabled people are

liberated, none of us can be liberated” In September 2021, Michelle Daley (ALLFIE Director), Micheline Mason, (Founder of ALLFIE), and Melody Powell (Inclusion Now editorial member), had the pleasure of interviewing Judy to talk about her activism, the film ‘Crip Camp’, disability justice and inclusive education.

Judy Heumann describes herself as a white, Jewish, 73-year-old, Disabled Woman. Judy was 18 months old when she contracted Polio. When she was 2 years old, a doctor recommended that it was in Judy’s best interest for her parents to place her in an institution, which they ignored. She now lives in Washington DC and is a lifelong activist for Disabled people’s human rights. From 2010 to 2017, Judy served as the first Special Advisor for International Disability Rights under President Obama in the US. In 2020, Judy was featured in one of the most talked about, revolutionary films, titled ‘Crip Camp’. ‘Crip Camp’ is an American awardwinning film which followed the journey of an unconventional summer camp of Disabled Young people. Many of the Young people that attended the camp went on to become activists and prominent leaders within the Disabled People’s Movement.

“I do believe things have been changing over the last decades, because of people like us and many others. But obviously the discussions we’re having today around education are because we don’t believe we’ve achieved what we want to be able to achieve”

Interview: Judy Heumann Activism and Leadership

We wanted to know a bit more about how Judy became an activist and her decision to take leadership. We had watched the film ‘Crip Camp’ which most definitely was not the regular summer camp for Disabled children and Young people.

We asked Judy: What led you to wanting to be involved in ‘Crip Camp’? Judy Heumann (JH): “I have been an activist since before we were using the word

with other friends: working on identifying the different expectations that people had of us because we had disabilities. When I was nine, I started going to camp: Camp Oakhurst then Camp Jened, the Camp featured in ‘Crip Camp’. My overall experience of being with Disabled people my age, from when I was 9, is that it has always been very influential [for] me. Really enabled me to begin to meet other people who had disabilities, not necessarily my disability but others. There is a different type of communication that we had. …but I think there’s something very special, it has always been about being with Disabled people… I could have discussions about… things happening where I felt the disability might have been a cause for denial of the right to go to regular school, not having images of who we were, not able to think about our futures in a way non-disabled people think about their futures. Members of the people in the film we’re still friends with today.” Judy was already aware of the different forms of social injustice based on being Jewish - “My parents are German Jewish immigrants and from Germany. They lost their families during the Holocaust” - and a girl. However, the level of injustice was to become compounded further by ableism. The educational inequality Judy experienced continues to remain a poignant moment in her life.

Fight for Inclusive Education

Like we see with parents at ALLFIE, Judy’s parents were also concerned that she received inclusive education in a mainstream school. There were obvious global parallels in the struggles of Judy’s parents asserting their rights for her to receive an inclusive education in a mainstream school back in the 1950s, as today:

JH: “Like in the UK, there were no laws on the books that made it illegal to discriminate or laws that affirmed the right to be educated, having a disability. None of that was in place [for Disabled people]”

“My Mom took me to school when I was 5 years old, [but] I was denied the right to go to school because I was a ‘fire hazard’”. For four years Judy was home-schooled:

JH: “The New York City Board of Education sent a teacher to our house for two and a

half hours a week. It wasn’t until the fourth grade when I was 9 years old that I actually started going to special classes, not in the neighbourhood school.

Interview: Judy Heumann The school programme was heavily medically focussed on speech therapy, physical therapy (PT), occupational therapy (OT). I didn’t get speech therapy, but I got OT and PT, and we had a lunch period at 11 and a rest period at 12. And at 2 o’clock we were packing up to leave. So on best days, you could get three hours of education, which you typically didn’t get for various reasons. Teaching – there were no standards, we were not being taught or using the same books as kids in the rest of school”.

JH: “One of the interesting things that was

happening was my Mom was learning to become more of an advocate, when I finally did get to go to school in these segregated classes. My Mom and other mothers learned that none of the high schools in New York City were accessible, and so if you used a wheelchair or couldn’t walk up or down steps, you were supposed to go back onto home instruction. So, a number of the mothers got together to work with the Board of Education, to address the issue and demanded that they make schools accessible, and actually it happened!” “There were three high schools in the area where I lived in Brooklyn, but they were old and really not easily made accessible. But there was a new school that had been built and it actually did have a ramp and bathrooms that were reasonably accessible. That’s the high school I went to, with other Disabled kids.”

ALLFIE knows that the struggle for inclusive education is tied up with the legal system which is inconsistent with the United Nation's Convention on the Rights of Persons with Disabilities (on education). Judy commented that: JH: “The reality is the principles of inclusive

education are the same for each country. The way things get implemented will in many ways depend on the socio/economic reality within the country.

“The 504

demonstrations in 1977 definitely were an amazing set of activities that went on and really engaged many people from the disability community and allies from around the country...”

“We took over a

floor of a federal building and it was the longest takeover of a federal building in the history of the US, still today, and we had a lot of support.” 5

Interview: Judy Heumann But the main objectives are getting children into school, getting them an inclusive setting, working with teacher training, helping people to learn how to accommodate children who have various disabilities to be able to benefit from learning, and an expectation that children can grow up to get jobs… I don’t believe that we have achieved what we need to have achieved, in terms of schooling and accommodation.”

504 Demonstrations

We had read about Judy’s campaigns and were interested to hear from her which campaign stood out to her the most and why? JH: “The 504 demonstrations in 1977 definitely were an amazing set of activities that

went on and really engaged many people from the disability community and allies from around the country, in ultimately letting us get this major piece of legislation passed in the United States, or regulations signed to implement this particular piece of legislation. It’s called Section 504, the provision of law in the United States that says if an entity is getting money from the federal government, they may not discriminate based on disability. It took 3 to 4 years to be able to get those regulations developed because, when the law was passed there were no definitions of, for example, who were ‘Disabled people’, what is ‘discrimination’, what would be the remedies to address some of these issues.” “We took over a floor of a federal building and it was the longest takeover of a federal building in the history of the US, still today, and we had a lot of support. Even from the mayor of San Francisco. It was kind of a ‘California Bay Area’ activity, which ultimately benefitted the Disabled people who were involved in the working groups and staying in the building and supporting and going to demonstrations outside.” “There was an amazing amount of activity, and so many that were involved and not just from the disability community. One of the members of the committee that worked on the demonstrations was a founding member of the Black Panthers and he was in the building. He was able to get the Black Panther who had a kitchen they were feeding kids in a place called Oakland California - and they were bringing food in, so people had a warm meal and food everyday… which was really important. People appreciated it and it was really one of the reasons why people were able to stay.” “You will learn a lot about the history [from Crip Camp] of those demonstrations and the activities around getting the 504 regulations ultimately signed. That was a real high point for a lot of reasons. We have made very important changes in all of our countries. I also believe that the laws that we have, people need to continually learn about these laws and how they work, or they can’t use them.”

Interview: Judy Heumann Intersectional oppression

Judy moved the conversation to address intersectional discrimination in more detail, which is a concern in education, particularly for Disabled people from marginalised, and under resourced communities. For example, the Department for Education (DfE) in 2019 reported that Disabled girls in English schools are exposed to a higher rate of exclusion than their non-Disabled peers [https://bit. ly/3eVWROX]:

JH: “Certainly, there are issues also around

race, where kids who are Black or Brown are more likely to be in segregated programmes, particularly if they have mental health disabilities or developmental disabilities - those are still ongoing issues. "I think, also because of the diversity of our communities - you’re not just a Disabled person. You’re a Disabled person plus, plus, plus… Like I define myself as a Disabled Jewish Woman.” “I have spent time within the Jewish community talking about the kinds of discrimination that Disabled people face... We’re not where we need to be but, certainly, I think we are making more progress.”

Global solidarity

As we approached the end of the interview, we asked Judy how she saw the future, when she started in the movement, compared to how it is now? JH: “It’s not better than I expected, but it is

certainly much better than it was when I was growing up. For me what is better is a growing movement of people. When we look from then to today, like in all of our countries, we're seeing a growth of our movements across disability and I think the voices of many Disabled people in our communities, and families and others are really understanding more clearly the types

“Certainly, there

are issues also around race, where kids who are Black or Brown are more likely to be in segregated programmes, particularly if they have mental health disabilities or developmental disabilities – those are still ongoing issues.”

“We’re not where

we need to be but, certainly, I think we are making more progress.” 7

Interview: Judy Heumann of discrimination that people are experiencing. And I think our movements are becoming definitely bigger - intergenerational, more people with invisible disabilities who are beginning to see the value and importance of them identifying as having a disability - which is ultimately very important.” JH: “Kids are still experiencing way more discrimination than they should, certainly in both our countries [in UK and America]. It is much more likely that those with [physical impairments] would be in regular programme now – not guaranteed but much more likely. Kids with other forms of disabilities [e.g. autism, mental health] are more likely to be in segregated or less integrated classes.” “I do believe things have been changing over the last decades, because of people like us and many others. But obviously the discussion we’re having today around education is because we don’t believe we’ve achieved what we want to be able to achieve, and to ensure that Disabled children get to go to school with other kids with appropriate accommodations.” “We still don’t see the Individuals with Disability Education Act or Section 504 of Americans with Disabilities Act being implemented to the extent that many of us believe that it needs to be, so we are still seeing children that are being segregated and not receiving an appropriate education.” “We’ve learnt a lot about what can work. At the same time, we also know a lot that can work isn’t working because the will is not there and the laws that are there aren't being implemented appropriately in countries like ours. More people are benefiting but not to the degree that they could or should be.” “Over my lifetime, it has really made me feel very aligned with other Disabled people in the US and around the world because it doesn’t matter where you live, the problems - the underlying views of Disabled people - are the same.”

“The battle is so much bigger than we thought it was. Unless all Disabled people are liberated, none of us can be liberated”

By Micheline Mason, Michelle Daley and Melody Powell REFERENCES: ■

Netflix (2020). Crip Camp: A Disability Revolution. Available at: https://youtu.be/OFS8SpwioZ4

■

Graham, E, et al., (2019). School exclusion: A literature review on the continued disproportionate exclusion of certain children. Available at: https://bit.ly/3eVWROX

■ 8

Heumann, J, et al (2021). Being Heumann: The Unrepentant Memoir of a Disability Rights Activist. Penguin. England

Interview

'Our Voice' project participants interview Baroness Tanni GreyThompson By Tasnim Hassan, Melody Powell, Matthew Smith and Samuel Bartley

Image: Baroness Tanni Grey-Thompson

On the 13th of September 2021, ‘Our Voice’ project members Tasnim Hassan, Melody Powell, Matthew Smith and Samuel Bartley had the fantastic opportunity to interview Tanni GreyThompson. Baroness GreyThompson is a member of the House of Lords and Paralympian with Spina Bifida.

Tanni was born in Wales, July 1969, and by the age of 6 her spine collapsed, causing her to be paralysed. Her parents had a long battle with their local authority for Tanni to be included in a mainstream school. We were keen to learn more about her experience battling the education system and to find out why she thinks inclusive education is necessary.

Interview: Tanni Grey-Thompson We began by discussing Tanni’s During this fight, her parents discovered the written work of Baroness Warnock primary education, where she explained how the headmaster on inclusive education and used it to “threaten to sue the Secretary of at her primary school “knew State for Wales for my right to go to that special schools just mainstream school”. weren't very good and didn't educate their children”. He kept Tanni is clearly “very much in favour of inclusive education” and strongly feels quiet about her impairment we need to work on “treating children in case she was pulled out like human beings and looking at their of mainstream education needs”. and forced into segregated schooling. Tanni feels that Being A Paralympian Is Not The attending ‘special school’ Answer To Everything would have prevented her from On the topic of education, we wondered achieving most things in her if Tanni’s experience with physical life, as it would have “shut down education (PE) at school impacted her any opportunity I had”. When it journey to becoming a Paralympian. The became time for her transition PE teacher at school had a significant to secondary education, Tanni influence on Tanni’s relationship with “I was lucky that the PE teacher realised that she didn’t have the sport: for my year when I joined, Mrs Cogbill, same privileges as her older was just really inclusive”. Tanni spoke sister and wouldn’t be going to about her school swimming pool and the same school: “I was about how her PE teacher was confused about why she was just watching others swim, 10 when I realised that wasn't so she encouraged her to participate. going to happen”.

Tanni suggests that the inclusion Mrs. Cogbill created by allowing her to join Accepting that she might be forced in “sent shock waves through loads of into segregated education, she visited people”. When discussing how society a ‘special school’. Tanni mentioned could normalise Disabled people’s that when looking around the school, fitness, Tanni suggested that rather her parents stated, “you're not going there because they have children at 14, than focussing purely on Physiotherapy, “you can do physical activity but get 15 playing with sand and water”. This the benefits of physio, which is more was quite a stark difference from the school life she knew and wanted, so her interesting. Because the more physically parents began fighting to get Tanni into active you are, the more you're able to do things”. mainstream school.

Interview: Tanni Grey-Thompson Tanni’s relationship with sports was a positive one, but not all children have the same experience. Disabled children are often encouraged to sit out of sporting activities unless they show enough skill to train for the Paralympics. Baroness Grey-Thompson showed concern that “the only option given to Disabled young people is to “be a Paralympian”. PE is compulsory within the education system, regardless of whether children are skilled in the activities. Yet, Disabled students don’t have this privilege “Disabled people [should] have the right to be really bad at sport”. Tanni feels that people need to understand that “being a Paralympian is not the answer to everything” and all children deserve access to fulfilling physical or sporting activity.

the media representation of Disabled people; the storylines behind the characters can often be quite damaging. For example, Tanni brought up the topic of Chris Tate on Emmerdale: “he was evil, so there was a lot of coverage around how he ended up as a wheelchair user, and that was his just reward for being an evil person”. When you begin to layer that on everything we know about the historical portrayal of Disabled people, like The Hunchback of Notre Dame or Phantom of The Opera, “Disability is linked to being evil”.

Our conversation with Tanni GreyThompson then delved into Paralympic marketing campaigns over the years and whether these improved or undermined Disabled people’s experiences. When referring to the Disabled Representation in Media 2010 ‘Freaks of Nature’ campaign, she The media we consume is a major expressed her concern stating that: “so part of all of our lives; often, Disabled much of the time Disabled people are people can feel underrepresented or called freaks”. She further elaborated misrepresented. Tanni felt that “growing that: “you need to understand the up, the only Disabled people on TV journey, the life experience of Disabled weren’t Disabled”, and although there people, the discrimination… that have been some improvements within Disabled people are called and treated the UK, we still have a long way to go. like freaks”. While agreeing the 2012 She continued to elaborate: “The fact ‘Superhumans’ campaign was a slight that I can probably either name most improvement, Tanni nonetheless people who are on TV or I know them explained this narrative only goes so personally is a real problem… I should far because “when it's a Paralympian be seeing Disabled people on TV that I who's a superhuman, it means everyone don't know, and I don't”. who's not a Paralympian… they could be treated as if they're subhuman”. Non-Disabled actors playing Disabled roles aren’t the only negative within

Interview: Tanni Grey-Thompson

Image: 'Our Voice' participants interview Baroness Tanni-Grey Thompson via Zoom. (Top row L-R) Melody Powell, Tanni Grey-Thompson, Matthew Smith, Armineh Soorenian, Samuel Bartley, Tasnim Hassan (Main image) Tanni Gery-Thompson.

This year’s Paralympic slogan, ‘It’s rude not to stare’, also raised some interesting discussions with Tanni. She reflected on her own experience, saying that “I'm quite comfortable with that [people staring], I think my training as an athlete and as a parliamentarian has helped me deal with it”. However, she additionally affirmed that “people going about their daily lives is not something that should be stared at”. Grey-Thompson concluded that “I don't think it moves the debate on”, asserting that this narrative has only led to more

intrusive encounters such as being asked “what’s wrong with you?” or “how did you get pregnant?” She explained that people “think that's a legitimate question, and that's the stuff I got in the 70s. We were moving away from that to questions like ‘why are you in a wheelchair?’”. We wanted to further discuss Tanni’s views regarding representation within the Paralympics, to which she commented that “there is something wrong where our British team is not more representative of British society”.

Interview: Tanni Grey-Thompson One example she gave acknowledged the price that comes with elite sports whereby “the average cost of being on the talent pathway is about £10,000 a year”. She additionally pointed out that within the Paralympic team of 222 athletes, only 17 were non-white. This led to further engaging conversations about the equality agenda in which Grey-Thompson noted that “there are some things where it's very easy to have tokens or badges to show your inclusion or show your allyship”. She expanded saying that disability “does get lost” within conversations that aim to support inclusion for any protected characteristic and that changing lives for Disabled people “doesn't necessarily take money but it takes effort”. Looking to the future, Tanni GreyThompson strives towards a future where Disabled people experience “an equality of opportunity” whereby she says “I just want Disabled people having the same miserable experience of commuting as everyone else”. Another change she would also like to see is building stronger networks of Disabled people in which she explains that: “you’d have thought with social media and online there’d be more communities of Disabled people, but I don't think they've necessarily gone from the campaigning groups that used to gather on the streets of London to actually connecting together”.

Connecting with other disability rights activists has truly “made a difference” as it reaffirms the message that “it's not just me who thinks that this is wrong, there are other people who think it's wrong and that for me has been incredibly helpful”. From discussing segregated education to the broader implications of the Paralympics, we thank Tanni GreyThompson for taking the time to speak with ALLFIE’s ‘Our Voice’ members. There truly was so much to learn from her wealth of experience as a disability activist, Paralympian and parliamentarian.

When asked if we could count on her support with future inclusive education campaigns led by ALLFIE, she replied with “I've been kind of around sort of some of the work of ALLFIE over so many years, really happy to support anything that you do - and it's really great to get Young people's voices and different voices as part of this”.

Inclusive Practice

Making a Difference in schools for Gypsy and Traveller Children and Young People By Billie Dolling

Image: Billie Dolling, Training and Development Officer, Friends, Families anf Travellers (FFT)

Billie Dolling is a Training and Development Officer at Friends, Families and Travellers (FFT) which is a national charity that works on behalf of Gypsy, Roma and Traveller communities. Billie has worked at FFT for over two years and co-authored a number of the organisation’s key research reports in that time, including Last on the list: An overview of unmet need for pitches on Traveller sites in England, A research paper: Suicide Prevention in Gypsy and Traveller communities in England and more.

Young people from Gypsy and Traveller communities can often face disadvantage and barriers in the education system. Information collected by the Department for Education shows that Gypsy, Roma and Traveller communities are the ethnic groups of pupils most likely to be excluded from school and least likely to attain a grade 5 or above in GCSE maths. During the COVID-19 pandemic, like the majority of Young people across the UK, most Gypsy and Traveller Young people switched to remote education. It became quickly obvious through our organisation’s casework that the switch to digital was likely to worsen existing educational inequalities for Gypsy and Traveller children and Young people and further disadvantages Disabled Gypsy and Traveller children and Young people. However, as Young people have been asked to return to school, this has also created new inequalities. Within Gypsy and Traveller communities, many people live in multigenerational homes and there is a large amount of respect and care given to older people and people who require support.

Inclusive Practice Because of the communal and sometimes confined nature of nomadic living, this has meant that some parents have been reluctant to send children back to school in case they bring the COVID-19 virus home with them and pass it to relatives susceptible to contracting the virus. Aside from COVID-19, when we speak to children and their parents, we often hear about the obstacles faced by many Gypsy and Traveller children and Young people within school settings – including low aspirations from teachers, racist bullying, lack of cultural understanding and more. We often find that Disabled Gypsy and Traveller Young people have worse experiences because of the intersectional discrimination. Yet, this is rarely spoken about more widely. We asked Avril Fuller, who is Outreach and Youth Coordinator at Friends Families and Travellers, about her experience supporting Disabled Young people from Gypsy and Traveller communities in education settings. We also asked for her thoughts about how the COVID-19 pandemic has impacted upon learning for Young Gypsies and Travellers. Avril is Romany Gypsy and has over 20 years of experience supporting Young Gypsy and Traveller people in education. We often find that parents from Gypsy and Traveller communities can feel unsure about what to expect from schools if their child needs additional support, or can feel scared that mainstream services will not be welcoming to them because of their ethnicity or culture. For that reason, having someone like Avril, who is friendly, open and welcoming can help to give parents the confidence to navigate issues which can otherwise feel very challenging. 1. Avril, can you tell us about your experiences supporting Disabled Young people, and their educational journeys, within the mainstream school setting? Avril Fuller (AF): "As an example from our casework, one Young person we work with received a placement in a secondary school for pupils with special educational needs, which went well at first, but then the other Young people at the school had more severe special educational needs which meant the Young person was not getting any social engagement. A meeting was set to assess this, and it was decided that the Young person would attend mechanic training. This training proved not possible so it was then decided for the Young person to attend an agricultural college. This college opportunity was also found to be not possible due to the risk assessment being too high for the Young person to take part in learning to drive a tractor. The parents had high anxiety levels, due to the Young person having to travel to school by a taxi, which was also causing the Young person to feel distressed. The Young person’s GP wrote a letter confirming his anxiety, which is allowing them to learn online at home, which they have been doing through lockdown."

Inclusive Practice 2. What barriers do Disabled Young Gypsy and Travellers face in schools? AF: "A barrier is transport to school, as well as the location of the school. Travelling to

school by taxi is not always possible. Taxi travel can be used to encourage independence if available, but the taxi is only for Young people meaning they have to travel alone, as parents would not be able to have a return journey alone. Another barrier is multi-floor levels in regular schools. For a Disabled Young person to attend a mainstream secondary school would be a challenge, as an assistant would be needed to help with using the toilet. Mainstream schools should be assessed for Young people with special educational needs to help include them in future."

3. Have you any examples of both good and bad practice from schools which you could talk about? AF: "We have been able to support Disabled Young people to successfully attend

mainstream education, up to secondary level, where the school was all on ground level. Sometimes, we can find that Young people with special educational needs, who are waiting on Education Health Care Plans (EHCP), may be expected to remain in a school setting that is not suitable for them until all assessments are completed. If the Young person drops attendance, this can hamper the assessment which then extends the process." "This process can create stress, anxiety and panic attacks for Young people, putting pressure on parents which can lead to increasing concerns for parents with their mental health and other health issues. Some schools will push through EHCPs regardless of attendance, due to this evidence that the Young person needs to attend school. Sometimes other Young people are removed from school to prevent attendance issues, detentions and exclusions, and are home educated until they are able to attend college. Admittance to college can also be hampered by a lack of an EHCP assessment, meaning Young people cannot attend because they don’t have 1-2-1 support. Other colleges have to be sourced and found, who can see Young people’s abilities to achieve in a practical manner and can help 1-2-1 with written work. This has happened where the college tutor has enabled Young people to complete training which has led to employment." "The aim of education for the outcome of employment for Young people also helps life skills to be learnt. EHCP plans can be for Young people up to 25, and can also include money budgeting, use of public transport, going shopping whilst accompanied at a distance and supportive housing."

4. Can you tell us about how COVID-19 has impacted on Young people you work with?

AF: "There was not enough provision of laptops from each school for Young people having to do online education during COVID-19, causing a loss of education. Young people who were home educated also suffered due to the lack of tech support, and libraries being closed which would have been used for computers and printers."

Inclusive Practice "Families were going to other family members to access a computer, which meant cases of up to four Young people waiting to use the same computer. This was hampered for some families who had no means of transport, no car access, who were living in isolation or who had breaks in internet access." "At FFT, we have had to refer clients to carers support for tech support to access iPads, tables and laptops which are appropriate for age and special educational needs. We were able to access a laptop charity to support home educated Young people, as well as those in school and college, which was funded by FFT. The Children in Need (CIN) Emergency Essentials Programme provided laptops and iPads to Young people, to access the internet – this has led to employment, training, accessing benefits, assisted Young people in caring roles to make appointments and receive follow up letters and accessing housing needs. These laptops and iPads have also allowed for online schoolwork so home educated Young people can access work sheets, follow BBC education and other resources such as Horrible Histories, virtual tours of zoos, museums, and research projects for geography."

5. Can you talk about any action you have taken alongside a Young person and family which has resulted in improved educational outcomes for the Young person? AF: "The devices that FFT were able to get for Young people have really improved

educational outcomes by giving Young people online careers support, enabling them to access online courses such as health and social care and enabling work experience opportunities which are good for CVs and possible future employment. This also allowed opportunities to continue construction courses and martial arts training."

Whilst there is evidence to prove the disadvantages Disabled Gypsy, Roma and Traveller pupils face when attempting to access the education system, there is also evidence of ways that schools, local authorities and central government can work to mitigate against these barriers. For example, one school we worked with recently found separate learning space for a pupil whose family were nervous about catching COVID-19 and passing it on to others in his home. As another example, a school we worked with installed a lift and multiple ramps around the grounds to enable better access for a client of ours who needed wheelchair access. So what is the moral of the story? A meaningful understanding of sociocultural differences and a desire to create a safe and engaging educational environment can often see Disabled Gypsy, Roma and Traveller pupils thrive in otherwise difficult situations. About Friends, Families and Travellers (FFT)

Friends, Families and Travellers is a leading national charity that works on behalf of all Gypsies, Roma and Travellers regardless of ethnicity, culture or background.

Disability History Month

UKDHM this autumn tackles two persistent misconceptions about Disabled people: • Disabled people are not capable of full range of relationships and sexuality! • Those with hidden impairments aren’t really Disabled people! By Richard Rieser, Coordinator UKDHM

Disability History Month Pernicious stereotypes persist that wreck lives for many Disabled people. Social Services still take children away from parents with learning difficulties or mental health issues, on the basis that their Disabled parents pose a risk to their children, rather than supporting the family to overcome barriers in line with the Human Right to Family Life. While children must be protected, live-in support for the family is considered too expensive. However, placing children into ‘care’ is far more expensive and often more psychologically damaging. The Poor Law institutions of the 19th century and 20th century were based on rigid sex segregation and harsh conditions to discourage fakery. Often, they were the only place Disabled people and their families could go to survive. Eugenicist inspired long stay hospitals and special schools from the 1880s encouraged sex segregation, sterilisation and treated inmates as if they were perpetual children. Any relationship between boys and girls and men and women were illicit. Recent efforts to provide Sex and Relationships Education (SRE) for all school students are commendable and should be supported, not just to educate Disabled children about abusive relationships, but to appreciate the joy of diverse sexual relationships. There are still many parents, teachers and others who, through their overprotectiveness, are denying the Human Right of Access to Sexual and Reproductive Health, Family Life and Sex Education.

This month we can take stock of how negative attitudes from the past are impacting on our practices today. The majority of Disabled people in the UK, as defined by the medical model definition of disability in the Equality Act (2010), would not be apparent by visible signs. They have hidden impairments. They are doubly discriminated against. Firstly because they are Disabled, and secondly as people generally do not believe them and assume them to be non-disabled. ‘You are disabled under the Equality Act 2010 if you have a physical or mental impairment that has a substantial and longterm negative effect on your ability to do normal daily activities. 14.1 million people in UK (OPCS). The guidance on the definition produced by the Department for Work and Pensions (DWP) is instructive here, in describing the range of impairing conditions which will be considered. They include: • Sensory impairments, such as those affecting sight or hearing; • Impairments with fluctuating or recurring effects, such as rheumatoid arthritis, Myalgic Encephalitis (ME), chronic fatigue syndrome (CFS), fibromyalgia, depression and epilepsy; • Progressive, such as motor neurone disease, muscular dystrophy, and forms of dementia; • Auto-immune conditions, such as Systemic Lupus Erythematosis (SLE); • Organ specific, including respiratory conditions, such as asthma, and cardiovascular diseases, including thrombosis, stroke and heart disease; • Developmental, such as autistic spectrum disorders (ASD), dyslexia, dysgraphia and dyspraxia; • Learning disabilities; • Mental health conditions with symptoms such as anxiety, low mood, panic attacks, phobias, or unshared perceptions; eating

Disability History Month disorders; bipolar affective disorders; obsessive compulsive disorders; personality disorders; post-traumatic stress disorder and some self-harming behaviour; • Mental illnesses, such as depression and schizophrenia; • Produced by injury to the body, including to the brain.

Many people with conditions made them at high risk to the effects of the COVID-19 virus. These include auto-immune conditions, diabetes, heart and lung conditions. They realised for the first time that they were Disabled people with rights and entitlements to protection from discrimination. The problem with the Equality Act is that it puts the whole emphasis on defining a Disabled person on their impairment and its impact on carrying out ‘normal activities’, which incidentally must be viewed without the ‘impact of medication, aids and appliances’. This means, for example, those with drug-controlled epilepsy or those with HIV on antiretrovirals must be seen as their impairment would be without the effects of the medication. A more social model influenced definition is found in the United Nations Convention on the Rights of Persons with Disabilities which the UK ratified in 2009, and forms a back stop in or legal appeals system: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. In this respect, many of those with hidden impairments are hindered by barriers of attitude of others from enjoying full and effective participation in society. Not getting the reasonable adjustments they need is a major cause of discrimination

and unhappiness to those with hidden impairments. The person experiencing the impairment and its impact on them, and people’s reactions to them, are best placed to know what adjustments they need and they should be collectively supported in getting these. This holds true at school, college work or in the community. UKDHM adheres to the social model of disability in which the barriers of attitude, environment and organisation cause most of the disablism we face. Such thinking did not exist in most of the past, with individuals and their impairments held responsible for the disadvantage and worse. Disabled people experienced being seen as bewitched, evil or punished by God. Disabled people were often viewed as perpetual children, incapable of adult relationships. However, in this era of Universal Human Rights, we can look back and reinterpret the mistreatment resulting from our systematic oppression, caused by negative attitudes, ignorance and barriers. Such an examination of the past allows us to recognise what must actively change for Disabled people to achieve equality.

During UKDHM: • Hold a meeting in your workplace, college, or community to develop policies and practices that empower and accommodate Disabled people in their rich diversity. • In schools hold assemblies and introduce disability equality into course work modules • Attend the online UKDHM Launch contact martha@worldofinclusion.com for a place. • Use the resources we are developing around these twin themes on our website www.ukdhm.org/resources

Inclusive Practice

Inclusive Education and inclusive society A fundamental rethink and the role of academics. Louise Arnold, Senior Lecturer in the Early Childhood and Education department at the University of East London, asks: Has the UK government made inclusive education and movement towards inclusive societies a priority? Inclusive education is wellembedded in the international rights treaties and documents we have signed and ratified on the world stage, but our government has not enshrined these in national policy documents. We must ask ourselves - has the government made inclusive education and movement towards inclusive societies a priority? If we accept the rights outlined in international documents such as the United Nations Convention on the Rights of the Child (UNCRC) and UNRCPD, we should be moving away from debating inclusive education as if it is optional and instead working to find solutions at all levels - creating a system of inclusive education that serves the community rather than trying to force students into a system of education that excludes and marginalises. As academics, our role holds responsibility in contributing to shifts in thinking, language, representation and elimination of barriers in disability and inclusion, alongside Disabled people, children and Young people. ‘SEN’ (special educational needs) is a term that is still used because of its place in policy and legal guidance documents (most recently the Children and Families Act 2014 and the accompanying Special Educational Needs and Disability Code of Practice, 2015), but it is not

Inclusive Practice without controversy. The issue that many have with this terminology is that it is no longer considered to be neutral or appropriate for policy. Arguably, we should be considering children’s ‘educational rights’ (Runswick-Cole and Hodge, 2009) rather than special educational needs. The construction of the child as having ‘needs’ that are ‘special’ (special in this case meaning different and additional), rather than recognising all children as having unique qualities, preferences and experiences and considering what it takes to support every child to have a meaningful and fulfilling education, creates a narrative that it is extra work to support and engage them, that including them is above and beyond, rather than expected practice. The language itself creates the idea that there are groups of children that are ‘other’ to society’s idea of what children should be (Griffiths, 2019). This has been in turn used to create negative stereotypes and narratives, and ultimately deny children access to education, services or inclusion in wider society. It can also create homogeny, the idea that all children with ‘SEN’ are the same, and benefit from the same interventions or support, rather than considering the individuality of all children. The discussions we have on our degree programmes at UEL begin with identifying the kind of language we are using, and considering how this can deepen divides. We then consider the basis for discussing inclusive education- what is it and why is it important to discuss across our programmes? The right to inclusive education has been made clear through international agreements, including the combination of the UN Convention on the Rights of the Child (though not mentioned specifically) and later the UNCRPD (2007), which calls for ‘an inclusive education system at all levels’ (24.1). It also states that Disabled people should not be ‘excluded from the general education system on the basis of disability’ (24.2 a) which can be interpreted under the social model of disability as excluding a person on the basis of impairment. ‘Full and equal participation in education and as members of the community’ (24.3). The UK government made reservations on ratifying the UNCRPD, stating that they understand that special (segregated) schools and colleges are allowed as part of an inclusive system, and that the right is reserved to send Disabled children and Young people outside their community to receive education, if it is seen as more appropriate (2009). This is in contravention to the clauses outlined above which champion a fully inclusive system of education and has been raised by many rights campaigners and organisations including ALLFIE [https://bit.ly/3t26X6Q] In more recent legislation, Section 33 of the 2014 Children and Families Act gives schools, settings and colleges the option to say that to include a Disabled child or Young person would undermine the effective education of other children and Young people (DfE, 2014). These reservations and clauses show the unwillingness of the Government to commit to implementing or progressively realising a truly inclusive system of education, along with blame placed on the child for why inclusion is not being implemented.

Inclusive Practice Unsurprisingly then, the most recent updates on the implementation of international rights documents suggest that progress towards inclusive education and more generally progress towards an inclusive society in Britain has not been as expected or hoped for by many families, scholars and activists. Our students consider two updates in particular, one that focuses on the implementation of the UNCRC and one that focuses on the UNCRPD: The Children’s Commissioners’ UNCRC mid-term review (2019, with an update due this year) reported grave issues with education including ‘a worrying level of use of seclusion and internal exclusion’ (p.3) and reports of children and young people, particularly those who attend segregated settings ‘being subject to restraint which causes pain’ (p.3). Segregated education then, is not meeting the needs of those excluded from mainstream education, or indeed keeping them safe. The Equality and Human Rights Commission (EHRC, 2017) in a report to parliament raised many concerning issues, including the impact of reclassifying SEN and moving from a statement of special educational needs to the Education, Health and Care Plan (EHCP) which is only for those with ‘more serious need’ (p.25). What this reclassification means is that children who have previously been labelled as having ‘lower levels of SEN’ (p.25) are not classed as having ‘SEN’ under the new classification and therefore not seen as a priority for support. Reducing or removing support in this way, by moving the goalposts for who qualifies for it means that children in the system have been failed, by the system that is supposed to be there to support them. The Equality and Human Rights Commission (EHRC, 2017) showed that children who areclassified as having SEN tend to experience poorer outcomes in education and they are ‘significantly more likely to be temporarily or permanently excluded’ (p.25), again painting a picture of a system that is failing children and young people. This report also found that:

• • • •

Disabled Young people (aged 16-18) are twice as likely not to be engaged in employment, education or training Less than half of Disabled adults are in work There is a significant disability pay gap Disabled people are more likely to be living in poverty (EHRC, 2017)

These are not issues that can be placed at an individual level- there are systemic issues that keep Disabled people out of these spaces. For example, if a Disabled Young person goes to university, the EHCP finishes and does not go with them. The importance of discussing these systemic issues as part of our courses is because many of our students hold dual roles; as parents, teachers and other educational professionals. They have their own views and opinions about inclusion based on their experiences within schools and settings, but this may have based on a version of inclusion in schools that does not include all children.

Inclusive Practice Another part of our role as academics can include linking together these key ideas inclusive education and inclusive society. When linking these issues together, the EHRC states, ‘Education is a fundamental human right that enables people to access other rights, including an adequate standard of living and the highest attainable standard of health’ (p.24), and UNESCO (2015) adds ‘segregated education can perpetuate negative attitudes and discrimination’ which compounds the experience of Disabled children and adults who are more likely to experience exclusion from school, poverty, unemployment, health inequality, exclusion from politics and access to justice (EHRC, 2017), symptomatic of an unequal, non-inclusive society. This must change. In 2005, Thomas stated ‘brave decisions are needed from policy makers about funding’, and this is still the case, but the drive for inclusion cannot be led solely from the top; parents, children and Young people and communities must be included so the drive comes from within (UNESCO, 2020), led by Disabled People’s Organisations- Nothing About Us Without Us (Charlton, 1998). Academics must play a role here too; challenging language used in discussions and publications and the ableism it represents, recognising the status of disability issues alongside race and gender, and not an optional ‘add-on’ for those with a particular interest, and creating research projects alongside Disabled people that speak to the experiences and concerns of Disabled people and work to eliminate barriers in research and academia. We should be considering intersectionality as a human rights issue- disability not as a distinct experience, but interwoven with for example race, class, gender, sexuality, contributing to a person’s experience. Academics should use their platforms to amplify the views and voices of Disabled people and children and Young people, influencing policymakers, and contribute to shifts in thinking and practice around disability and inclusion. Academics must recognise that they are accountable to the people they are discussing and ensure their work is aligned with the priorities of Disabled people and rights-based models.

We must all broaden our understanding and definition of inclusion to include everybody, for the benefit of not just the education system but for society as a whole.

Inclusive reading If you like Inclusion Now, you may be interested in subscribing to ezines and blogs from Inclusive Solutions.

https://inclusive-solutions.com/termly-inclusive-ezines/ https://inclusive-solutions.com/category/blog/

Legal Question

“

My grandson, Nadeem, is living with me. His mum is a single parent and currently detained in a long stay hospital with mental health issues. Nadeem is struggling in school with serious ‘school phobia’ and wants to learn remotely, at home, until he feels more in control of his anxiety. Our Local Authority has turned down my request for an EHC assessment and plan, that would include SEND provision to be arranged remotely from where Nadeem’s living. I have requested remote education and regular support for Nadeem, from an education psychologist and mental health team. As his mother is on a Mental Health Act Section 3, and struggling with her own mental health, what rights do I or Nadeem have to make a statutory appeal to tribunal, with some urgency? We do not know if or when Nadeem will be in a position to submit an SENDIST application. What can I do as his grandmother to support him?” A child’s parent or a Young person may appeal to the First-tier Tribunal against the decision not to carry out an EHC Needs assessment. If you have parental responsibility for Nadeem, and he is under compulsory school age then you can submit an appeal yourself. If Nadeem is over compulsory school age, which is after the last Friday in June of the academic year he turns 16, the right of appeal becomes his. You can however still assist in an appeal and if he is not able to make an appeal himself, you should be able to do so on his behalf. The Tribunal rules say that you cannot lodge an appeal until you have considered mediation and have contacted a mediation advisor. This must be done within two months of the date of the letter from the Local Authority refusing to carry out the EHC needs assessment. You do not have to agree to mediation and can request that the mediation provider simply sends you a certificate. The decision letter from the Local Authority should give contact details for a mediation advisor, who should be independent. Once you have received the mediation certificate, you can lodge an appeal with the Tribunal, subject to meeting the requirements set out above. Any appeal must be received by the Tribunal within two months of the date of the decision letter, or one month of the mediation certificate, whichever is the later date. To lodge an appeal, you should complete ‘Form SEND35a’ which is found on the government website. When you have completed

the appeal form it should be sent with all other relevant documents to ‘send@hmcts.gsi.gov.uk’. In deciding whether the Local Authority should carry out an EHC needs assessment, the Tribunal will consider whether Nadeem has or may have special educational needs, and whether it may be necessary for special educational provision to be made in accordance with an EHCP. It is unfortunate that these appeals are not quick and securing support in this way can take time. Regardless of whether an EHCP is in place, it is important to note that if Nadeem is of compulsory school age and is unable to attend school because of his own anxiety, then the Local Authority may be responsible for arranging a suitable education otherwise than at school. This will depend on the specific circumstance of each case but if you have medical evidence to support Nadeem’s difficulties, you should share this with the Local Authority. If the Local Authority refuse to make alternative arrangements, then this decision may be challengeable by way of Judicial Review. This is a complaint in the courts against a public body which seeks to resolve the situation. It is my recommendation that you speak to a legal advisor if you consider this to be the case. If families find themselves in difficult situations like these then they can seek legal advice on their individual circumstances. It is important to remember that up to date advice on your specific circumstances will always be beneficial.

This Legal Question was posed by ALLFIE’s Simone Aspis, and answered by Lydia Neill, a Paralegal in the Public Law Team at Simpson Millar Solicitors.

www.simpsonmillar.co.uk

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This magazine is published by: The Alliance for Inclusive Education (ALLFIE) A national campaigning organisation led by disabled people. ALLFIE works to change laws, practices and procedures which discriminate against Disabled Young people and prevent inclusion. ALLFIE works together with allies to build a social climate in which everyone has a valued place.

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A team of psychologists and associates who specialise in cutting edge practical strategies and ideas for developing effective inclusion in local mainstream schools and communities. We work with anyone who wants to bring about the real systems changes that are necessary to move towards a truly inclusive society.

Tel: 0115 9556045 or 01473 437590 Email: inclusive.solutions@me.com Website: inclusive-solutions.com

World of Inclusion A consultancy that provides advice, resources and training in the UK and around the world to develop equality for disabled people especially in education. Richard Rieser is an expert disabled international equality trainer, consultant, film maker and writer and teacher.

Basement, 78 Mildmay Grove South, London N1 4PJ Tel: 020 7359 2855 or 07715 420727 Email: rlrieser@gmail.com Website: worldofinclusion.com

DISABLED PEOPLE, PARENTS AND ALLIES, WORKING TOGETHER to educate, facilitate and empower everyone who wants to be part of the growing inclusion movement. Together we want to bring down the barriers so all young people can learn, make friends and have a voice in ordinary school and throughout life. For each and every young person, this is an essential human right.

ALL MEANS ALL

Inclusion Now Magazine 60 Autumn 2021

Articles inside

Interview Tanni Grey-Thompson

UKDHM

Interview: Judy Heumann

Friends, Families and Travellers

Inclusive Practice